Ryan's April '08 Blog
April 1, 2008 - Ryan had a good night. He slept all night other than waking up about 3 a.m. so we changed & weighed him. He went right back to sleep. Dad arrived at the hospital at 6 a.m. to relieve Mom so she could go get ready for work. Mom came back on her way to work to meet with the surgeon. She is still pleased with how he is absorbing his feeds and the poops that he is having so she went up on his volume again. Mom arrived back at the hospital this evening to find that the cultures did grow another staph infection in the spinal fluid on both sides. NO!!! When will Ryan catch the big break he needs? The lab report says the culture grew a "few" staph, which to us means we caught it early but unfortunately still means surgery tomorrow to remove the shunts. Now Mom is waiting for the neurosurgeon to come say what time surgery is tomorrow. It will be another 4 weeks before we will be able to put the shunts back in. Sure wish this was just some nasty April Fools Day joke... Met with the neurosurgeon at 7 p.m. Surgery is tomorrow at 8:30 a.m. It should take about 2 hours. He will remove the shunts and put in an external drain on the left side. Ryan will have the external drain for a few days so we'll be in the PICU. Then we will wait and will evaluate if we can drain the shunts into his belly again.
April 2, 2008 - Surgery went very well. They wheeled Ryan to the OR at about 8:45 a.m. and he was in the PICU at about noon. He was awake, smiling and kicking. That is the best we've seen him after surgery. The neurosurgeon said that he did not get much fluid to come out of the left side so when Ryan was tapped on Sunday it might have dislodged whatever was making it work slowly and the rest drained on its own. Ryan will keep the external drain on the left side over night, have a CT scan in the morning and then if he is empty enough, the drain will be removed and we'll move back out of the PICU. Then we will wait for a few weeks. Luckily during this waiting we can continue to work on his feeding and maybe if we can get him up to full feeds (still by pump) before the next shunts are needed we can go home for awhile. We won't cross our fingers yet as something always seems to come up but boy it would sure be nice. Mom met with the surgeon about Ryan's feedings this afternoon. She said we need to get to 48 ml per hour on full strength formula to get to full feeds. We are currently at 26 ml per hour and plan to go to 30 ml per hour in the morning. The hope is to get here by next week.
April 3, 2008 - Ryan has had a really good day. He was awake basically all day - happy and playing - with a few power naps. He played with Dad this morning and played by himself this afternoon. Of course by the time Mom arrived he was tired and just wanted a little holding, with which he fell asleep within minutes. The surgeon increased Ryan's feeds to 34 ml per hour this afternoon and up to 40 ml tonight if his residuals are low. Then 44 ml in the morning and we'll be to the goal of 48 ml by afternoon or evening. Then we can get off of the IV nutrition (finally). Ryan had a CT scan this morning and his head is nicely decompressed. There is one new cyst on the right side in the back temporal horn that we will watch. The neurosurgeon decided today that we'll do another CT scan tomorrow where they put the dye in it. This way we'll be able to see if his ventricles are communicating at all. We don't have much hope but it will be very interesting to see what it shows. They will pull a spinal fluid sample in the morning before the CT so we can see how the antibiotics are working. As of right now we'll be on antibiotics until the 29th of this month. That is a month of antibiotics. The external drain will probably come out tomorrow after the CT scan.
April 4, 2008 - Ryan has had a good day. He has been playing with Dad and taking some power naps. When physical therapy was working with him, she had him sitting up, she removed her hand and he sat there for a few seconds on his own before he started to fall to the side. We were very proud of him. They did the CT scan with the dye in it and the results show no communication between the ventricles as we suspected. His body really has not had much time to heal so we wouldn't expect them to talk. Hopefully after we get everything under control and he can get stable, maybe we'll see some improvement. The culture taken during surgery on Wednesday grew the infection on the left side so we'll leave the drain in overnight and see if the culture taken today grows out. When he does not grow the infection then we'll take the drain out. He will be up to full feeds tonight and off of the IV nutrition. Tomorrow he'll go to full strength formula and the next week we'll start working on getting him to take more food at one time so we can get to the goal feeding but over a 1/2 hour window. Then we can work on oral feeds. It looks like we probably won't get to go home until after the next surgery. Darn! Antibiotics will go to the 16th not the 29th. Not sure now when the next surgery will be. From the other surgeons standpoint it should be the week of the 23rd but the neurosurgeon wants to put the shunts in before the antibiotics are done. We'll see how this one plays out. Ryan weighed in at 16 lbs 8.5 oz today. Such a fat boy!
April 6, 2008 - The culture taken on Friday did not grow any infection so the external drain came out yesterday. This meant we also got kicked out of the PICU and are now back over in the oncology ward. The neurosurgeon has decided that the cyst like space that Ryan has on the right ventricle needs to be tested for infection. The neurosurgeon has decided he needs to be a little more aggressive on this so the next time the shunts go in we know all cyst like areas are clear. This unfortunately means another surgery. Because this space is in the temporal ventricle horn the neurosurgeon needs to go in just above the right ear, drill a pin size hole into the skull and then go into the space guided by ultrasound to drain it and get a spinal fluid sample. He is planning to do this Tuesday or Wednesday. The very unfortunate thing about these infections Ryan has got is that they are causing the cyst like spaces. Before we came in in December his ventricles were just one space - not all these cyst like spaces. If Ryan can ever get a chance to have time to heal these will hopefully open up and go away. We do have an option to have the neurosurgeon open up Ryan's skull to go in and clean out these spaces but we are not crossing this bridge yet. We got to full feeds and off IV nutrition Friday night. Yesterday we went to full strength formula. Unfortunately starting Friday night his nasty diaper rash started coming back and as of today it is hurting him and is over more area. We have a wonderful butt cream that you can only get here at the hospital as well as a skin barrier so hopefully he will clear up soon. We have been watching Ryan's poops and there have been some that are more liquid (leaked all over Mom Saturday night) and today he has had 7 poops in less than 12 hours. The nurse called the on call surgeon who said go back to 3/4 strength formula and wants us to test for C diff and Rotovirus again. We don't believe it is either of these. We think his body is just out of whack because of the increased volume, increased formula strength, and the changing of some IV meds to oral meds. Tonight we'll have him sleep on his belly on the Boppy so we can open up his diaper and air out his behind. He has been in a great mood all day - talking, laughing, kicking, playing. We took him on 2 wagon rides which he loved and beat on his poor ducky. He was very funny when we backed the wagon into his room, he was a little unsure of it and his eyes got all buggy. He has been wearing his cute little doggy slippers and BSU slippers today. All of his girls have been admiring them. He also has been doing a lot better with grabbing things and putting them into his mouth and Mom & Dad have been trying to eat in front of him - this hopefully will help him with the oral feeds. Grandma got Ryan to fall asleep about 6 p.m. - hopefully he'll sleep the rest of the night.
April 7, 2008 - Ryan has been so happy today. He has been laughing, talking, kicking and playing all day. He has only taken a total of 1 1/2 hours of naps today. Dad gave him a bath today and he enjoyed it (he hasn't enjoyed them since before we went home from the NICU). Dad couldn't get himself to leave today - Ryan was just too much fun but finally took off about 2. Mom started to not feel good late yesterday afternoon and wasn't feeling better this morning so she stayed home from work today to rest so Dad lined up Grandma & Grandpa to come spend the evening with Ryan until he falls asleep. As of 8 p.m. he is still awake and they are loving on him. The surgeon stopped by this afternoon after Dad left to see Ryan. The nurse said she came out of his room and said Ryan made himself NPO (not able to have food). Apparently he pulled his feeding tube out and was busy flicking the tube around with formula going everywhere having a good time. Silly boy! Of course he wasn't happy with the tube being put back in but got over it fast - as he usually does. The surgeon didn't write any new orders. We'll just stay where we are for now in regards to his feedings. Ryan has had 7-8 poops today but they have all been thick and airing his rear end out last night has helped his rash get better. They will do this again this evening. The neurosurgeon stopped by and has ordered a head ultrasound tomorrow and surgery Wednesday. He will get back to us tomorrow as to a time.
April 8, 2008 - Ryan had another good day. Played all morning with Dad and actually took a 3 hour nap this afternoon. The nurse had to wake him up though so she could do some stuff so then Mom kept him up until 7 when she couldn't keep him up anymore so she put him on his belly and he was asleep fast. Physical therapy came by and worked on him and Ryan sat up on his own again for a few seconds - Mom got to see this time and was so proud. He complained about it but did great. The neurosurgeon came by and surgery is at 7:30 a.m. tomorrow. That means pre-op at 6:30 so an early day for us parents. Ultrasound didn't show anything unexpected. Forgot to say that his Rotovirus and C Diff came back negative (as we expected). Ryan has only had 3 poops so far today and they are thick so he is doing great. The surgeon has put him up to 7/8 strength. Hopefully she will leave him there for a day or two to let his belly adjust.
April 9, 2008 - Mom & Dad arrived at 6 a.m. this morning. We got Ryan ready for surgery and headed to pre-op at 6:30. At 7:30 they wheeled Ryan into surgery. He arrived back at his room at 10 a.m. Ryan was awake, happy and doing really well. The neurosurgeon was pleased with how the surgery went. He got 22 ml out of that cyst and it collapsed nicely. That seems like a lot of fluid in the temporal horn. The neurosurgeon said it was clear with a light yellow color to it. It has been sent down for culturing and as of this evening the white cell counts came back ok and the gram stain showed no bacteria but we will still wait to see what the cultures show. The neurosurgeon talked with the surgeon about when he could go back in and she said after the 16th (week from today). The neurosurgeon will wait as long as he can. The plan as of right now is to do an abbreviated MRI next Wednesday, see how full he looks and then if he isn't looking too bad we'll image the next week as well as probably tap to test his fluid again after he is off antibiotics. So surgery is up in the air as to when but it will either be sometime between the 21-23 or after May 2nd. The surgeon stopped by and was pleased with how Ryan appears to be doing on 7/8 strength but says we'll wait until Friday before we go up to full strength. Ryan did really well after surgery today although he wanted to be held. Mom held him most of the afternoon while he slept until she put him back so she could catch a nap as well. Then she woke him up around 4 and made him stay up until 7 when he fell asleep. Hopefully he will stay asleep all night. Maybe this weekend we'll begin working on oral feeds and changing his continuous to be more of a bullas feed.
April 10, 2008 - Ryan is 5 months adjusted age today! He weighed in at 16 lbs 9 oz. He had a pretty good day. Not a lot of poopies but he did spit up a couple times and burped afterwards. The nurse pulled out a bunch of air after the first spit up. Mom had noticed Ryan has been burping a lot lately. We're not sure what is going on with that so we'll continue to watch him. He didn't nap much today so by 5:30 he was a tired tired boy. He fell asleep and then Mom made him wake up at 6 for a little bit. Grandma showed up so about 6:30 she grabbed him and we let him go back to sleep. He will probably sleep all night. Tomorrow he goes to full strength formula. Let's hope he does well.
April 12, 2008 - Yesterday Ryan was very sleepy. Having basically gone to bed at 5:30 p.m. Thursday night, he slept until after 8 a.m. when Dad finally woke him. He had about 3 hours of naps during the day and passed out again by 6:30 p.m. and slept all night long. He has had a lot of air in his belly the last few days and has spit up a little more too. When Mom arrived yesterday after work she picked him up and he proceeded to puke all over her shirt. Scrub shirt please! Luckily Mom keeps a scrub shirt in Ryan's room in case of things like this. The spit up and the sleepiness are signs of fluid build up but probably mean nothing. Unfortunately what everyone else takes as their kid being a kid - we have to think of infection in his head so we have to be very aware of him doing anything out of the ordinary and then we have to watch it closely. We're assuming it is just him having a few of those days but we also have to think of the alternative. This is how we will be until he can talk and tell us when his head is hurting. Ryan went to full strength formula yesterday and we don't think this has anything to do with his spitting up since he had done this the on Thursday as well. It could just be him still getting over surgery on Wednesday. We also think Ryan is cutting a tooth. He has been really wanting his hands in his mouth, drooling, and wanting his gums rubbed. Mom checked his gums and it looks like on the bottom left could be a tooth. We had the nurse look and she thinks it may be one. We'll continue to watch this.
Today Ryan did better. He did not spit up but had quite a few burbs and he was not as sleepy. We talked to the surgeon about it and right now she is not concerned but we'll have to watch. As long as his spit up looks like formula and is not green and the volume is not a lot - we're ok. We won't be making any more changes regarding his feedings until Monday. We'll give him a few days to adjust and then we'll start shortening the length of his feeds to try to get him hungry. It was really nice in Boise today so we asked if we could take him outside. The pediatric floor has a play room with an outside patio. It is not truly open yet but the child life specialist allowed us to go out for a little bit. Ryan wasn't to happy to be going for a wagon ride when we left his room so he was not in a good mood but after being outside and finally settling down he was doing better. When we put him in the wagon and pulled him around the patio he was happy, kicking and beating on his duck. Tomorrow is to be even nicer in Boise so we've arranged to take him outside again. They found him an activity saucer too so he gave a try today and wasn't too sure about it. We'll just keep working on it. Ryan didn't want to go to sleep tonight until about 9 p.m. Must not have played hard enough today or got too much sleep the last couple days.
We did ask the surgeon what do we have to do to go home in her eyes - she said we could go home. For what we are doing with his feeds we could talk about over the phone. Mom had asked the neurosurgeon on Thursday what he thought and he said we could go home. The only drawback to going right now is the antibiotic Ryan is on. It is every 6 hours. So for now we will stay in the hospital until the antibiotic is done, which is Wednesday. Ryan will have an MRI by then and as long as he doesn't have a lot of fluid in his head (meaning he would need surgery next week) and we have no big setbacks on poops and feeds, we may go home between Wednesday and Friday. Even if it is just for a few days or a couple weeks - we soooooooo need it! We need to show him that there is more to life outside of the hospital. So keep your fingers crossed that all goes well!!!
April 13, 2008 - Today was a warm day in Boise - hit almost 80 - so of course the AC goes out in Ryan's room. We have the nurse call the maintenance man and he worked on it and said the water cooler or something was not on for Ryan's room so he turned it on and then was going to go up in the ceiling and turn some other drain on. We decided we would take Ryan outside again and his RT buddy Linette stopped by and said if she wasn't busy she would go with us so we could take him down outside the hospital by the chapel so we could show him flowers and stuff. The surgeon, neurosurgeon and pediatrician all came about the same time. No changes today from the surgeon other than to start the vitamins back up, the pediatrician checked Ryan's mouth and she agrees he has a tooth coming in, and the neurosurgeon said we'll to an MRI on Tuesday. Then we will decide if Ryan can go home. We may just do a couple taps of his head and try to hold off surgery until the beginning of May but if he has too much built up then he may do surgery this week. Ryan took about an hour nap and then we woke him up to go outside. He wasn't too sure about the bright light, the breeze or his sun glasses but overall he did well having been stuck inside for 9 months. He finally got so mad we went back inside and as we came out of the staff elevators outside of the PICU, the hall was flooded with an inch or two of water. We carefully went down the hall over to the oncology wing, which was not flooded. On the way we saw the maintenance man that had worked on fixing our AC problem. We asked if the flooding had anything to do with what he did - he said yes. Someone had left some other drain open and it filled up in the ceiling in the PICU and dropped the ceiling tiles and has caused a big mess. We got to Ryan's room, which is right next to some doors that go into the PICU and could not believe the mess we saw (there are photos). Unfortunately it was warm on the oncology side since the AC was now really out so we stripped Ryan down to his diaper and put a cool cloth on him and the nurse found like the only fan and put it in his room. Grandma & Grandpa had come up to stay with Ryan this afternoon so Mom & Dad left them after we got Ryan comfortable enough. Mom & Dad went home and did yard work and cleaned house. The AC finally did come back on and then Ryan got too cool so they had to put more clothes on him. He played well this afternoon and then passed out by 6:30 p.m. and has been asleep ever since. Let's keep our fingers crossed that he will be able to come home Wednesday or Thursday. Even if it is only until the following week and then he has surgery - we'll take any time at home we can get!
April 15, 2008 - Ryan had the MRI this morning and Mom & Dad knew there was fluid in his head just by touching it. Our hope of Ryan going home this week is now gone. The MRI shows him to be very full of fluid and the cyst that the neurosurgeon drained last week is full again - as big as it was before. Ryan's poor right side looks as nasty as ever. When Mom left the neurosurgeon tonight he was paging the pediatric surgeon to see when she was available for surgery. He was also going to talk to the infectious disease doctor. It looks like we'll have surgery either tomorrow or Thursday. Ryan is so full that the neurosurgeon does not think tapping him is going to be much of a benefit - he probably will fill up pretty fast and as full as Ryan is the neurosurgeon is surprised that he has been as happy as he has. He does not believe it will last - also part of the reason he wants to take care of this. This could be part of the reason for the increase in Ryan spitting up more in the last week. Darn! We were so close to going home and everyone at the hospital was excited for Ryan. We assume we'll go home next week now unless the neurosurgeon wants us to stay in the hospital past the 10 day mark (or if Dad forces it). Please say a prayer that the surgery will happen soon, Ryan will do great with this one (this will be #16 surgery by the way), and we can go home next week! One of these days things have to go Ryan's way right? It is 9:30 p.m. and the neurosurgeon just called - surgery is tomorrow in the afternoon after his other surgery. Don't know a time but he thought probably sometime between 3-4.
April 16, 2008 - We took Ryan down to pre-op about 3 (where he kicked, talked, laughed the whole time - it was soooo cute) and they wheeled him in to surgery about 4. They called at 8 and said they were done. Things went well but on the right side, the neurosurgeon is not positive that he got all of the pockets of fluid so we will have to wait and see how Ryan drains. Ryan got up to the PICU about 9-9:30 and it took awhile to get him settled. As soon as he saw Mom & Dad he got upset. The nurse gave him more morphine and he settled down but then he started wincing like he was having spasms or pain in his belly and was really fussy. The neurosurgeon came by and we said he needs something else. They gave him more morphine and that seemed to settle him down. Basically he will get it every 15 minutes if he needs it. When Mom & Dad left at 11 he was resting pretty comfortably. Hopefully he will stay that way the rest of the night. We are praying this one will work and we can go home soon! We hope you will pray for it too!
April 17, 2008 - Ryan had a so so night. The nurse did well at staying on top of the pain meds but he still had his heart rate up and got to itching where he pulled some tape off his face and took some skin with it. Of course he was not pleased about that. Mom & Dad got to the hospital this morning to find him resting comfortably even though his heart rate was a little high. They had changed the pain meds from morphine to fentanol plus gave him adavan (sedative). The surgeon came by and she seemed pleased with how things went and how he was looking. She did mention that he had a lot of adhesions where the incision is from his ostomy take down. This could cause problems with future surgeries and could cause him pain in the future so we'll see how that all plays out. (Adhesions develop usually after surgery where the part that is healing sticks to another body part. In Ryan's case his bowel is stuck to his incision on the abdominal wall.) This afternoon Ryan was having some issues where would drop his heart rate to the 70s as well as his oxygen. This worried Mom -she was fearing he was going to stop breathing again. He settled down and was doing good and then as Mom & nurse Karla were changing his pants he decided to stop breathing. This was the lowest Mom had ever seen his oxygen levels (he was at a 3 when we want 100) and he was a nasty shade of blue. Karla and the RT worked on Ryan and he eventually came out of it. He lowered his heart rate but nothing like last time when he crashed. They got him settled and he slept for a couple hours and then he woke up and had some nice quiet awake time. Mom thought he was starting to act like he was feeling better. (Before when he would wake up he would be crying in pain and this time he wasn't.) He talked a little and was acting like he wanted to kick and almost smiled. He stayed awake for 4 hours and then finally fell asleep. Ryan has hit the 17 lbs mark! Yesterday he weighed in at 17 lbs. 1 oz. and today's number was higher but it is inflated since he is puffy from the fluid. We'll see what he ends up weighing in a day or two after he loses some of the puffiness. He has almost doubled his weight since he arrived back in December. After shift change the night nurse checked his temperature and it was 38.1 C (normal is 37.0 C) so he is running a small temp. Hopefully he just got warm under his blanky. The neurosurgeon came by this evening and was a little glad that Mom & Dad told him to put Ryan in the PICU after surgery. If Ryan is up for it tomorrow he wants to do another abbreviated MRI so he can see what is draining and what is not on that right side that is so nasty. Ryan is definitely draining - his head does not feel as full, his is a little puffy (especially around his belly) and he is peeing like a racehorse. He is also farting up a storm and they do not smell like roses either. This is a really good thing because from the manipulation the surgeon did on his bowel and the clearing of some adhesions there is the worry he will get lazy bowel syndrome for a few days. The farting means that stuff is moving through and that there isn't a blockage. The neurosurgeon was happy with the farting as well. Hopefully tomorrow will be a much better day and we'll get kicked out of the PICU. Speaking of the PICU, they really sustained a lot of damage from the flood on Sunday. They lost 4 rooms, half of the nurses station, the doctor's office, the patient kitchen. The construction crews have come in and walled off half of the PICU and part of the hallway to the oncology ward (that also went to the main PICU door) and they are currently doing cleanup and repair of the damage. The 3rd floor of the hospital, which is under construction, also received damage and the NICU (on the 2nd floor) also had to shut down 4 rooms. Leave it to Ryan (and us) to really make our mark! Just don't add the repair costs to our bill - it is already high enough but we would take Ryan's name on one of the rooms (the insurance company has paid enough for it). :-)
April 19, 2008 - Ryan has been doing well the last couple days. He has not had anymore spells where he stopped breathing. He had a funny breathing pattern with Dad on Friday so the doctor decided to keep Ryan in the PICU one more night. The surgeon started feeds on Ryan Friday. She started him at a rate of 24 ml per hour of full strength formula and then after 12 hours she wanted him up to 48 ml so at midnight the nurse went to 48 and within 2 hours he threw up. She turned the feed off for an hour and then started back up at 24 ml and when we got in at 9 we talked with the day nurse about it. We thought let's try 36 ml and see how he does. He lasted 4 hours and then threw up. So we held his feed for an hour and then started him up at 30 ml and he did ok. When the on call surgeon came to see Ryan later he said let's go slower than that and do 2 ml increase every 4 hours starting at 2 a.m. Ok we like that. Ryan did have an MRI on Friday and we went over it with the neurosurgeon Friday night. Ryan is draining but it is slow (which is normal) so there is still a bit of fluid in his head so we don't know for sure what all is draining. We will do another MRI next week sometime to see how he looks. We moved out of the PICU this afternoon and are back over on the oncology side. After we got settled in Ryan's new room he napped on Mom for 3 hours and then we woke him up as we were worried he would not sleep during the night. Grandma & Grandpa came up for a visit and we got some cute video of Dad tickling Ryan. And now the good news - Ryan is going home this week! As soon as we get him to full feeds again and he shows he is doing ok, we get to go home! We expect to get him to full feeds Monday morning so we're thinking we'll get to go home Tuesday or Wednesday as long as Ryan doesn't pull anything else. The neurosurgeon wants him out of the hospital as soon as possible in hopes of him not getting any more staph infections plus he said rotovirus is going around and RSV is still out there. Mom & Dad are trying not to get too excited so we don't get crushed if it doesn't happen but it is hard not to get excited. Of course this is just in time for Dad & Grandpa to go on their Texas trip to watch the PGA golf tournament that is in Dallas next weekend and then to Utah to move Ryan's great-grandparents to Boise so they will miss out on Ryan's initial days home (and getting adjusted to his new surroundings). Mom is just praying no issues arise. She definitely does not want to go through what we did when we took Ryan to the emergency room back in December while Dad is gone plus our neurosurgeon will be at a conference starting next weekend through most of the following week. Mom definitely wants Ryan to behave! We're saying our prayers that all goes well and we can go home - we hope you will say one too!
April 20, 2008 - Ryan has had a pretty good day. We've played, taken a wagon ride, snuggled, and napped. He has had some reflux that he does not appreciate but in all he is doing great. We met with the neurosurgeon and pediatrician late this morning and the game plan is to have Ryan go home Tuesday but come back for another MRI later in the week. Tuesday! Can you believe it?? He is currently at 40 ml of food with the goal of 48, which he'll hit in the morning. It is so nice to think of only two more nights here. Again we're trying not to get too excited but we are - how could we not after almost 9 months in the hospital and a total of 12 days home. We're praying and keeping our fingers crossed!
April 21, 2008 - Today was a busy busy day (and now Mom & Dad are exhausted). Dad met with the pediatrician and PCC this morning to get the ball rolling on going home. Orders were written and prescriptions were sent in. We met with the Norco guy to get our equipment. We will be going home with the apnea monitor, oxygen and nebulizer again plus this time we will have a feeding pump. After we got done with that we met with the PCC again and went over more stuff and asked questions. Then the neurosurgeon came by. Ryan will have another MRI in the morning and then we are to make an appointment with the neurosurgeon for 2 weeks out. He paged the neurologist as we need to double check if we are letting Ryan grow out of the Phenobarb or if we need to up the dosage and the neurosurgeon was not sure if the neurologist might want another EEG to check on the seizures Ryan had in January. We heard the neurologist was on his way over to round so we waited. Everyone saw him out at the regular peds desk but he never made it to oncology. Finally Mom decided she needed to get back to work (this was after 3) and as she got off the elevator she ran into the surgeon that has handled Ryan's tummy. So they talked and then went back up to Ryan's room. We will have the home health nurse send the surgeon Ryan's weight each time she visits, we'll call her every 3 to 4 days to touch base on changes to feeds, how Ryan is doing, and how his poops are, etc. We will make an appointment with her for 2 weeks out as well. Then she decided he needed the Broviac taken out before he goes home. We had expected this to stay in for a few months until we are sure Ryan isn't having any more surgeries but she said our risk of infection goes way up when we go home so we need it taken out. We had planned to go home by noon tomorrow but she can't get us in until 2 p.m. We will go over to the PICU where they will sedate Ryan enough for him to breath but not really feel it and they will take it out. Then the PICU will watch him for a few hours to make sure all is well and then we can go home (how fitting that we begin and end our stay at the PICU). Our assumption is now we won't go home until about 6 p.m. Ryan knows something is up. He has been wanting Mom & Dad around all the time the last few days and just kind of seems to know something is about to change (could it be us moving most of his stuff out of his room and taking it home - maybe). For some reason Ryan likes to do these 4 months and 1 week stays in the hospital (almost identical to the NICU stay). Let hope this is the last time for a stay like this!
April 22, 2008 - Ryan came home today! He had his MRI first thing this morning and then physical therapy a little later. He definitely was in a mood where he didn't want Mom or Dad far from his site but yet was in one of the best moods in a week. He was super chatty, laughing and all smiles. The neurologist came by around 1:30 p.m. and reviewed everything and said let's leave Ryan on the level of Phenobarb that he is one since he is getting 1/2 the dose and not having seizures. The hope is he will continue to grow and not have seizures and then we'll be off that med. If he does have another seizure then he may put Ryan on a different seizure med. We are to go see him in 2 months. Before the neurologist arrived we checked on the radiologist report regarding the MRI. It showed the left side is draining nicely but the right side has not really had any change. Great we thought - we better page the neurosurgeon in case he needs to tap Ryan before we can go home or if he thinks we should not have the Broviac out. So we waited to hear. We didn't end up moving over to the PICU for the Broviac removal, they decided to come to us around 2:15. The neurosurgeon showed up about the same time as the surgeon and intensivist. He said we'll continue to watch the right side - we'll do another MRI in 2 weeks but for now he said go home. He knows the right side is going to give us troubles but for now Ryan needs to go heal. If we see any signs of pressure before our appointment in 2 weeks we will call him. The neurologist agreed as did the intensivist and surgeon to go home. The surgeon removed the Broviac after Ryan was sedated by the intensivist. Of course it could not go smoothly - Ryan decided to go apnic and stop breathing again. UGH! They got his numbers back up and finished the procedure. Within 10 minutes he was awake, happy & kicking again. The nurse monitored Ryan until about 3:15 to make sure he had no other issues. We then finished getting his room packed, loaded in the car and got our discharge papers so we could head home. Aunt Lindsey came by and was holding Ryan and he fell asleep. She put him in the car seat and he really didn't stir. We said goodbye to the oncology staff (yes Mom teared up) and headed over to the PICU. We said goodbye to them (more tears) and Ryan again didn't stir. Dad went to grab the car and once we got out in the sunshine and the breeze hit Ryan's face he woke up. We got him loaded in the car and we headed out. Ryan was awake the whole way home and was curious and looking around. Of course he had a good poop on the way and stunk the car up. We got home, changed him and played with him for a bit. He was definitely happy and talking up a storm again. Then about 7:30 he was soooo tired. We wanted to keep him up until 9 but tonight he deserved to go to bed when he wanted - he has had a busy day. So he passed out in Grandma's arms by 8. We put him in his crib and he is sleeping nicely as we speak. We don't know what we will do if he wakes up and does not hear the fish channel that the hospital had (he loved it and had it on every night with some music). We hope he will continue to enjoy being home and will start to blossom. It is going to take some work on Mom & Dad's part to handle him and his equipment on their own but hopefully soon we will get a system down. Tomorrow we will begin to work on a schedule for naps and going to bed so we can get Dad some sleep when he starts taking care of Ryan on his own in a couple weeks.
Today was bittersweet as we were excited to finally get Ryan home but sad to be leaving our PICU and oncology staff. We want to thank everyone in the PICU and pediatric oncology for all the care they gave Ryan. When we came back in December we were so scared to not be going back to the NICU and having to go to PICU. And then when we got moved to the oncology side again we were scared to be leaving the PICU but knew our PICU friends were close by in case we had any issues. We honestly could not have been introduced to a better bunch of people. They genuinely cared greatly for Ryan - he was a very popular boy in both areas and leaves many girlfriends and friends. Mom & Dad came to think of a lot of the staff as friends and are happy to know that they will be the ones taking care of us again when we have to come back in the future. We just hope he does not feel like he needs to see his girlfriends within a week and will stay home longer this time. We will continue to update the site as our journey continues so stay tuned...
April 23, 2008 - Ryan has been doing wonderful his first day home. He slept all night. Mom only had to get up to fill his feeding pump and change a poopy diaper. Otherwise he slept well. Mom finally woke him up at 7:30 this morning so we could start working on a schedule. He has been in a great mood today. We have done lots of playing, stretching, sitting up, tummy time, etc. with not too much complaining from the little man. He even seems to nap better at home. He got an hour in this morning and is going on 2 hours this afternoon as we speak. Today is Mom & Dad's anniversary and we cannot tell you what a great anniversary present it is to have our son home.
April 24, 2008 - Ryan has had another great day. He slept all night again. We played and went for a car ride to pick up Grandma Connie from the airport (which he slept basically the whole way). He napped a little - not as much as yesterday and was definitely tired early tonight. Grandma even got him to take 2.5 ml of Pedialyte by bottle. That is a huge accomplishment from where we had been. Before you get the bottle anywhere near his mouth and he fussed. We had him sit in his highchair during dinner and he did well with that. We gave him a spit bath and he did well with it until towards the end. Then he had enough and let Mom know about it. He passed out by 7:30 and hopefully will sleep all night again!
April 26, 2008 - Ryan has continued to do wonderful. Yesterday though he started off by being a stinker. He got up about 7:30 so Mom checked the residual in his tummy and was just starting to put it back in when he pulled the NG tube out of his nose. NOOOO! Mom tried to put it back in but was not totally sure what to do so she called the home health nurse and asked her to come earlier so we could get it back in so he would not miss his 9 a.m. meds. She arrived about 10 a.m. and explained to Mom how to do it and Mom got it back in. Before she arrived Mom had tried to get Ryan to take some formula thinking he had gone almost 3 hours with no food but he was not really interested. He only took 1.5 ml. UGH! Oh this boy it going to give us grief on eating isn't he? An everyone thought Mom was a finicky eater! Yesterday we took a ride to the bank and post office and on the way home Ryan had decided he had enough. We played in the jumperoo, napped, did some tummy time and did well.
Today was more of the same but we worked on sitting up, reaching, and Grandma Connie got Ryan to rollover twice! Of course Mom did not have the camcorder or camera near her to record the occasion but Mom did see it! We tried twice to work with Ryan on eating and he didn't do well either time. He was very cute this evening as Mom was working out in the garage and Grandma had Ryan sleeping but every time Mom came in the house and he heard her voice his eyes would pop open. He can hear...Tomorrow is to be a beautiful day in Boise so our plan is to put him in the stroller and go for a walk around the block in the afternoon.
April 28, 2008 - Ryan continues to do wonderful. We have been having a lot of fun. He has played in his jumperoo, played with his kicking toy, had tummy time, snuggle time, and gone for walks. Sunday we put him in the stroller and took him down the street. He did not appreciate the wind or sun in his eyes. When we turned around so it was not in his eyes he enjoyed it more. Today Mom just carried him and we went to the end of the street and back. He did ok but was about asleep by the time we got home. He set off his apnea monitor Saturday night and Sunday night. Each time Mom ran across the house to find him in a deep sleep and it showed he had a low heart rate. The low heart rate is set to 80 so he was either in such a deep sleep he dipped below it or there was bad connectivity. Either way - Mom's heart rate was anything but slow. She did not get much sleep either night. Dad got home this evening and Mom is looking forward to him getting up with Ryan at least once so she can get some sleep. There is no real concern for the low hear rate alone. It just scares you to death when the alarm goes off in the middle of the night. It is a high pitched sound - like a fire alarm. Not the funnest thing to be woken up to. Ryan has been spitting up a lot the last couple days which has concerned Mom but this morning we think we know why. Mom was looking at the NG tube and it was in at a depth of 24 - it should be a lot deeper than that (more like 29) so this could be the issue. So with Grandma holding Ryan down, Mom took the tape off, pushed the tube in further and retaped. Ryan was not amused but he has not had any issues since and we're hoping tonight will be much better. Ryan hasn't had much improvement with his oral feeds but PT starts back up tomorrow and we'll go to having 2 2 hour breaks during the day. Hopefully as we work with him he'll build those swallow muscles back up and become hungry enough that he wants to eat. It is hard to believe tomorrow night he'll have been home a week. We have never made it 7 days in a row. Last time it was 6 days with a surgery and overnight hospital stay and then 6 days and then in to the emergency room with infection. We hope this continues way past 7 days!
April 30, 2008 - We have made it over 6 consecutive days since Ryan came home. We are so happy about that! He continues to be very happy and doing well. He has really been enjoying his alone play time lately. He'll kick, talk, laugh, smile - it is so cute. Yesterday he got to meet Grandma & Grandpa's dog Tucker. We're not sure what he thought but Tucker thought Ryan was good enough to lick. Ryan was very cute on Monday night. He did not know that Dad was back so when Dad got up with him at midnight it took him a minute or two to realize who it was and then it was like oh it's Daddy that means it is play time and he got all wound up. He was kicking, talking, excited. Mom eventually got up to help (as we had a little problem of Mom turning on the food pump but not plugging it in to Ryan's NG tube so he didn't get fed for 3 hours and it ended up soaking his bed) and had to finally kick Dad out of the room so she could get Ryan back to sleep. Mom then got up with Ryan the next two times and again he was so excited, kicking and talking. Mom kept telling him that Dad was not around and he would see him the next day. He has definitely loved having Dad back home. Ryan had an eye appointment today and it all went well until the doctor looked in the eye and said Ryan's left side is pale. As of right now we do not know exactly what this means but the ophthalmologist said that in other hydrocephalous cases where this has happened the person has either had problems with their peripheral vision or in something busy (like a Where's Waldo) they are not able to pick out the detail (like Waldo) so we will have to wait to see how that plays out. The occupational therapist came by late this afternoon to work with Ryan on his feedings and she made some progress. She grabbed a different type of bottle that is basically a zero flow so he really has to bite down or suck on it to get anything out. The hope here is we'll get him past the being scared so he knows it is ok to take the bottle and then can work up to the regular flow. He ended up taking 6 ml today - the most he has done in a long time so we are very happy. Ryan did not get much in the way of naps today so he was a bear getting to sleep tonight. Mom just hopes he sleeps all night as this is her first night with no help (Grandma Connie left yesterday and Dad went back to work tonight).