Ryan's September 2007 Blog
September 1, 2007 - We called the hospital this morning before we went down and nurse Suzi told us she had a present for us - a poopy diaper! When we got down to see Ryan they had moved him from the conventional ventilator to CPAP. He was doing good with it - having a few spells of dropping his oxygen and lowering his resps from time to time but overall not doing too bad with it. We saw the good poopy diaper and this evening Mom got to change one! When we left him this evening he had been on CPAP for 10 hours and was doing good. Let's hope that continues. When we talked with the doctor this morning he said that the test from the fluid showed a white cell count that was low so he doesn't think he has the ventriculitis and thinks it was a urine infection. The cultures should come back in the next few days so let's keep our fingers crossed that Ryan will get a break on this one! His weight is up to 3 lbs. 8 oz.
September 2, 2007 (New photos added 9/4/07 @ 7 a.m.) - Ryan is having a good day. He is still on CPAP (over 24 hours and counting) and still having good diapers. Mom got to hold him for about 2 hours today. It was so nice to hear him make little noises now that the breathing tube is out. Then we tortured him by putting him in Dad's Boise State hat and took pictures. He fit in the hat pretty easily with lots of room to spare. He'll probably end up hating BSU because of this. When we left they were starting his feeds back up again - 3 ml over 6 hours. We're keeping our fingers crossed that he'll do well with them again. He also got moved up to a bigger boy incubator.
September 3, 2007 - (New video added 9/4/07 @ 8 p.m.)Ryan has had another good day. He is taking his feeds and giving good diapers (Dad finally got to change a poopy one). Dad got to hold this morning for a couple hours and Mom got to hold for an hour this evening. During Mom's hold they tried him on the nasal cannula and he did ok - it will take some getting used to but we were very proud of him. So far the cultures that have some back on the ventriculitis test have been negative - let's hope it stays that way. From the sounds of it the shunt surgery could be tomorrow.
September 4, 2007 - Ryan had a good day. He had a couple spells overnight with his breathing where they almost put him back on the conventional ventilator but they tried repositioning him and that helped him. He is still on CPAP. The doctors had wanted to try more of the nasal cannula today but after his spells last night decided to leave it as is for now. His feeds have continued (up to 4 1/2 ml over 3 hours). His surgery for the shunt is set for tomorrow afternoon (we've been careful not to say surgery, shunt or the neurosurgeon's name around him so he won't have any issues - we want to get this over with). The doctor today said the cultures from the brain tap are still negative for ventriculitis so we are definitely pleased about that. This afternoon Mom and Dad got to help give Ryan his first tub bath. He wasn't too happy about it but he did a great job! Then we put him in clothes for the first time! What a great day!
September 5, 2007 - Ryan had a good day and finally got the shunt! Mom held him this morning before prepping for surgery and he did great. Then we put him in the warmer bed to prep for surgery. He was really mad about getting the breathing tube back in and he let us know it. Finally the nurse had to put him on his belly to calm down - he was then in his happy place until surgery. From when we went with the nurse and resp tech down to surgery to drop him off until we got back into his room in the NICU to see him was 1 1/2 hours. The surgery went well. The neurosurgeon put the shunt on the left side of his head. This is a temporary shunt that will drain the fluid from the ventricles in his brain to between the scalp and skull. Ryan's body will then reabsorb the fluid. This will help relieve the pressure in his head as well as allow the blood from his brain bleed to break down. After 4-6 weeks we'll see how his body does. Our hope is his body can heal enough that he won't have to have a permanent shunt, which will then drain into his abdomen or his heart, but the neurosurgeon said it is pretty likely he will need the permanent shunt.
September 6, 2007 (no pictures) - Ryan had a rough night. His blood pressure was low, his heart rate was up and again he stopped peeing. They did a chest x-ray around 2:30 a.m. and it looked horrible. He was having a lot of respiratory issues and his oxygen levels were high and he just was not a happy camper, which I probably would not be either if there was a pressure change in my head. Around 9 a.m. the doctor decided Ryan needed to be moved from the conventional ventilator to the oscillator (a step backwards). They took a culture from his lungs and are checking to see if he has an infection. His lung issue could be left over from last week and the surgery might have made it get worse. They started Dopamine and that has helped his blood pressure and his peeing. He is back on antibiotics and they gave him a blood transfusion as well to help with his heart rate and blood pressure. His head is a bit big from the moving of the fluids out to his scalp. This should start to go down over the next week as the body reabsorbs the fluids. He isn't getting any feeds so no poopy diapers. Hopefully he'll start getting better tomorrow so we can get him back on CPAP in the next couple days and get feedings started again.
September 7, 2007 (no pictures) - Ryan has had a slightly better day. He has good urine output, his blood pressure has seemed to stabilize (thanks to the Dopamine) and his heart rate is down a little bit. His head isn't as big today as it was yesterday and the neurosurgeon stopped by late last night and was pleased with how Ryan was doing (minus the ventilator change). Initial results from Ryan's lung culture do show something so it could be the bacteria he has had in there or something new. I believe they expect more results tomorrow. His chest x-ray looked better today but his ventilator settings are still high. He acts a little agitated (we assume because he hates having the tube in) so they have been giving him morphine and a sedative to help him settle down. We keep telling him the sooner he gets better the sooner he can be back on CPAP but he just isn't listening!
September 8, 2007 (no pictures) - Not much has changed really since yesterday. The only thing that is new is the lung culture did come back with what he has (some big medical name) and the antibiotic Ryan was on does not treat it so they have switched him to a different one. Hopefully we'll see improvement in the next couple days.
September 9, 2007 (no pictures) - Ryan seems to be feeling a bit better today. His x-ray seemed a bit better and his head is looking good. His oxygen settings are still a bit high but they were down from where they have been the last couple days. They are hoping to start his feeds back up in the next couple days.
September 10, 2007 (no pictures) - Ryan still seems to be feeling better. He has handled the nurse messing with him rather well today without having to be turned up on his oxygen. While Mom was there during lunch he was wide awake, looking around and did great when Mom changed his diaper and cleaned his gums. About 3 p.m. the nurse said Ryan got pretty agitated so they gave him something to settle him down. The doctor started him on a second antibiotic that should help with his lung infection. They did say his x-ray looked better today and they said the brain ultrasound showed the fluid had gone down in the ventricles. Granted that fluid is in other parts of his body - he is a bit puffy still. He weighed in at 1710 grams - 3 lbs 12 oz! Even though it is inflated with the fluids, Mom and Dad will still take it! Ryan is off the Dopamine and if he can stay off it for 24 hours then they will start his feeds again. When we were there this evening his blood pressure was dropping so we may see him back on Dopamine by tomorrow. Keep fingers crossed that he evens out so we can start feeding him tomorrow.
September 11, 2007 (no pictures) - Ryan got to start eating again today! They were daring and started off with 4 ml over 3 hours (usually they start 3 ml over 6 hours and work their way up) and he did wonderful. Nurse Suzi gave him a little taste on his tongue and he loved it. He even had a really good poopy diaper. He still has his little fits about the breathing tube from time to time - he is definitely feeling better! The chest x-ray looked better today and his ventilator settings are coming down - let's hope to see him on the conventional ventilator tomorrow. His weight and length are in the 50th percentile so he's doing good there. He was sucking on his pacifier when Mom and Dad got there this evening and he was smiling at us - it was so cute. We're going to have to get that on film soon! We're hoping we'll be able to hold him by the weekend.
September 12, 2007 (no pictures) - Ryan is 7 weeks old today! Well our hope to get on to the conventional ventilator went in the toilet this morning. Apparently his blood gases over night showed his Ph and CO2 levels out of whack so they had to adjust settings and get those back in line so when we were there today his oxygen was in the 40% range. We're probably a few days out on getting him moved to the other ventilator. His is doing good with feeds and having poopy diapers so they increased his amount to 6 ml over 3 hours. Let's hope he continues to do well with those. He is very alert when he is awake, tolerates his cares (diaper change, suctioning of his lungs and cleaning of his gums) and is peeing a ton. The neurosurgeon came in while we were there this evening and checked/massaged Ryan's head. He is concerned that the pocket where the fluid is to drain isn't bigger. There are a few reasons why this could be: 1) the pocket has closed up; 2) some of the blood has clogged the shunt so it can't drain; or 3) there isn't much left to drain. They will continue to watch his head growth, how he acts and where they feel fluid and if there is a big change they will do an ultrasound before Monday. If there isn't really any difference he'll have a head ultrasound Monday. Let's pray for option #3. The other options would mean more surgery.
September 13, 2007 - Ryan has had a good 24 hours. They increased his feeding to 8ml (will go to 10ml overnight) and he has had very little residual left in his stomach. He was very active for several hours while grandma was there and later when we were there. His eyes were wide open and he was giving us smiles. His ventilator settings were a little lower tonight and he has had good diapers.
September 14, 2007 - Ryan had a good night but started being a stinker this morning. We told nurse Merri that he is getting her back for last time she had him and had to put in a new IV and take tape out of his hair (which he did not like). His ventilator settings are up a little from yesterday but yet his x-ray looked a little better. Merri expected his x-ray to look worse than it did based on the vent settings when she came in this morning. Ryan had his 'I'm not happy' fits throughout the day. We need to get a good picture of it because he scrunches up his face and turns bright red. Unfortunately if you don't hold his head he'll move it all over and will pull his breathing tube out. We suspect these fits are still because he doesn't like the tube being in. We helped Merri give Ryan a spit bath this evening. For the most part he did really well although he about jumped out of his skin when Mom put luke warm water on his chest. Oops. He is up to 12 ml on food and having good diapers so we're pleased with that. He weighed in at 3 lbs. 13 oz. He's 7 oz. away from doubling his birth weight.
September 16, 2007 (no pictures) - Ryan has had a pretty decent weekend. He weighed in today at 4 lbs! He's becoming a big boy with big chubby cheeks. He is up to 18 ml of breast milk and they are adding in a supplement as well. He is having great diapers too. His ventilator settings are starting to come down. They lowered the mean and the frequency and when we were this afternoon his oxygen was 24% but then he threw his little fits and up went the oxygen and he has stayed in the 30's ever since. Let's hope we can get him off of the oscillator this week and get moving forward!
September 17, 2007 - Ryan has been a stinker. Over night he grabbed his tube and put a kink in it. I think he about gave his nurse a heart attack. He has been having some bronchial spasms so they have started Ibuteral treatments and they seem to be helping. After the first treatment they were able to lower his frequency, mean and amplitude on the ventilator and his oxygen numbers have been in the 20s. Let's hope we're turning that corner. They are holding his feeds at 18 ml with the supplement and have it on a pump to feed him over an hour I believe so he doesn't get a full tummy so fast.
September 18, 2007 (no pictures) - Ryan has tried for a couple days to get his breathing tube out and this morning he succeeded. Unfortunately for him it went right back in. His ventilator settings are still about where they were yesterday other than his oxygen % was in the 40-50 range most of the day. When we left tonight it was 37 so that's better. He is up to 20 ml of breast milk with a supplement (30 ml is an ounce I believe). He had his eye exam this morning and his eyes are developing well and no issues but they will continue to check him weekly since he has a high risk of having problems with eye development. We had the doctor go over Ryan's head ultrasound tonight and it looks like the left ventricle has drained nicely with the shunt but the right side has not. The bleeding on the right side is breaking down and is smaller (which is good) so the new thought is that the little pipeline that connects the left and right ventricle where fluid goes in between each side could be blocked with some of the blood that is breaking down. We have not met with the neurosurgeon yet this week so we'll see what he says and what he wants to do. We didn't really see the area that has the PVL damage but the radiologist report said no new increase in size to the PVL so that is good news. We looked at Ryan's chest x-ray and it is looking better although with his lung disease it isn't great. He has 2 more days of antibiotics and then after being off them for 48 hours they will culture his lung secretions and see if it looks like the infection is gone.
September 19, 2007 (New photos added 9/21/07 @ 7 a.m.) - Ryan has finally complained enough (between throwing fits, acting aggravated, and trying to pull out his tube) that the doctor decided to try him on the conventional ventilator. The result - Ryan has been a much happier camper. The doctor and the RT were surprised how well he was doing right off the bat. The hope is to have him off the ventilator and all IVs in the next few days. The only hold up could depend on what the neurosurgeon wants to do. He did make it in last night and was pleased with Ryan's head but did make the comment about the right side not draining and that he may need to put a shunt on that side. That will mean more surgery. I suspect he will wait until next Monday's ultrasound to make his final decision so Ryan may not be off the ventilator by then - the doctors may wait until the neurosurgeon decides. They really hate having to take him off the vent and then put him back on. Ryan is 8 weeks old today and weighed in at 4 lbs. 3 oz.! Crazy to think he is double from his birth weight. He is up to 22 ml of breast milk plus supplement. We're hoping to hold him tomorrow!
September 20, 2007 (no pictures) - Ryan has had a good day. He is up to 26 ml of breast milk plus supplement. He weighed in at 4 lbs. 5 oz. and has had some explosions in his diapers. We just missed the neurosurgeon this evening and he was not pleased with the lack of fluid in the pocket and told the nurse to let us know that we are looking at surgery on Tuesday. Hopefully we can catch up to him to go over everything by Monday. We did not get to hold him today as the doctor wanted to give him one more full day on the conventional ventilator so the plan is to hold him Friday night. Mom and Dad are looking forward to it!
September 21, 2007 - When we got to Ryan's room tonight he was sleeping like Dad - arm over his head - very cute so we had to get a picture. After 2 weeks, Mom finally got to hold Ryan again. He did really well and was big eyed and alert. Hopefully it was as good for him as it was for Mom. When we put him back in bed he had a big explosion in his diaper. When the nurse went to change him, he wasn't done with his poopy and almost nailed the resp tech but luckily nurse Merri was fast and moved the diaper to catch it.
September 22, 2007 (no pictures) - Ryan had quite the day. As nurse Merri was changing his diaper, she found out he was not done. He then proceeded to projectile poop over the diaper and nailed the end of his bed. So as she was trying to deal with that he started peeing as well and nailed himself in the mouth. She adjusted his pee pee so he would not continue to do that again. Seeing that she was in a no win "code brown" (as the nurses call it) she let him finish up before doing anything with him. Then he got his mouth cleaned out a few times, new bedding, got his bed cleaned and got a bath. Apparently he was pretty p.o.ed during it and tuckered himself right out and slept most of the afternoon. We had hoped to get Dad to hold him this evening but he was sleeping so good and had been in a "leave me alone" mood ever since his "code brown" so we let him be. We'll shoot for tomorrow for Dad to hold him. He is up to 34 ml of food this evening!! What a boy - he is getting over an ounce at each feeding now.
September 23, 2007 (no pictures) - When nurse Merri got into work today she noticed Ryan was just not right. His coloring wasn't good, his heart rate was high, he had a high temperature and he looked to be having problems breathing. She got the doctor to look at him and they believe he has a new infection. They are starting antibiotics again and have ordered cultures to see where it is at. He had been in an open air bed and we helped get him back in the giraffe (the one he was originally in - the Cadillac of incubators). He seemed to calm a little bit once he got put in bed and was on his belly. The neurosurgeon was going to do a tap to test his spinal fluid but he would have to tap the left side, the right side and do a lumbar puncture to be able to test all of his fluid since none of it is really "talking" right now. With how Ryan was the neurosurgeon and the neonatalogist decided not to do that right now. They will re-evaluate Monday. One test on his lungs has come back positive so now we have to wait for the cultures to know what but the doctor does not think this one is a lung infection. Ryan's fever spiked at 103.5 F but has since broke. He did weigh in at 4 lbs. 10 oz. today. As of right now his surgery is pushed out until they know what is going on.
September 24, 2007 (no pictures) - Ryan is feeling a bit better today. The nurse said he was acting hungry (he likes his food) so they have started his feeds back up again but only 10 ml for now (he was at 34 ml). If he does ok today then they will ramp back up probably tomorrow. The blood & urine tests have come back negative and the doctor today still does not think he has a lung infection but just some bacteria, which is normal when you have a tube in your throat for so long like Ryan has. He doesn't think he has an infection where his shunt is either because Ryan is not acting like the doctor would expect if he did so let's continue to keep our fingers crossed that it was just a flu bug or something like that and he continues to get better. Ryan had a head ultrasound today and there is no change in the fluid levels in his ventricles and no increase in the PVL so that is good news. The surgery is still pushed out a few days until we can see if he continues to feel better. He weighed in at 4 lbs 14 oz. This is probably a little inflated with the extra fluids he has had in the last 24 hours but he is still progressing. His respiratory numbers have leveled a bit - he isn't having as many drops as he was yesterday.
September 25, 2007 (no pictures) - Ryan is still feeling better. The lab work is not showing any signs of infection but we still have a couple more days for the lung cultures. The doctor is still thinking that there is no infection and if he did have an infection in the brain - he is the worlds fastest healer. The doctor wants to touch base with the neurosurgeon and see if we can hold off on surgery until next week. He'd like to give Ryan a couple more doses of steroids for his lungs since most of his ventilator settings are low but Ryan is still needing between 30-40% oxygen. If the doctor were to put him back on CPAP right now he'd require 70% which you don't want. They have increased his feedings to 30 ml by this evening and he is doing well with them and seems to be a happy camper after his belly is full. He is having good urine output and stooling. He had his eye exam this evening and he is still developing as expected - no worries but they will continue to check him weekly. Mom has been home the last couple days feeling ill so she has not got to see Ryan since Sunday. Hopefully she will be better tomorrow so she can go see him. It has been hard on her not seeing her little man.
September 26, 2007 (no pictures) - Ryan has had a good day. They are going to start increasing his feedings 4 ml every 12 hours until he reaches 50 ml. When we left this evening he was up to 34 ml. About 1/2 hour before feeding time he starts getting fussy and once you feed him he is a happy boy. His oxygen % is still in the 40s and we aren't sure why. The doctor talked with the neurosurgeon and they have decided that they will take Ryan off the antibiotics today (which they did) and watch him until Friday. If he starts acting up like he has an infection then they will do more tests and figure out what is going but if he continue to act normal then surgery is scheduled for Friday to put a shunt in the right side. As much as we hate to have surgery this week we are ready to get this over with so we can focus on his lungs. Mom was able to see him today and thought he looks so big compared to Sunday. He weighed in at 5 lbs 1 oz today and 16 inches long. He's getting big! His little legs and arms are getting rolls on them!
September 27, 2007 (no pictures) - The neurosurgeon stopped by last night and as of right now surgery is scheduled for between 8 & 8:30 tomorrow morning. We'll see if Ryan let's it happen or if he'll throw a wrench into the plan. Will write more later...
September 28, 2007 (New post-surgery pictures posted 9/30/07 @ 8:45 a.m.)- We never made it back yesterday to write an update as we ran out of time with the Boise State football game last night but Ryan did have a good day yesterday. We got down to the hospital around 7:30 this morning and they were getting Ryan ready to head down to surgery. He got a bath over night and Jana had his hair all spiked out so we had to get a couple pictures. We took him down to surgery around 8:15. The neurosurgeon came out from surgery to get us a little after 10 and all went well. He checked the shunt on the left side and it was ok - the pocket had just collapsed as he had suspected so once he opened the pocket back up the fluid drained as it should. The shunt went in with no problems on the right side and will drain to the same pocket. Ryan is doing well and will be sedated most of today. They plan to start his feedings back up at 2 p.m. He is at 42 ml of breast milk now and still packing on the weight. When we saw him after surgery he would open his eyes every once in a while so he was starting to come out it but still wasn't able to move very much. Let's keep our fingers crossed that his lungs will stay healthy this time so we don't have another set back there. Let's also pray that everything will work with the shunts as expected so we don't have to have any more surgeries for quite a while.
September 29, 2007 - Ryan has had a really good day. He had his eyes open, was very alert and was looking at us when we were down there. He was very cute in that he had to keep his right foot out of the covers. If you put it back under the covers he would move it right back out. He did keep his nurse busy in trying to pull his breathing tube out and he did manage to use his tongue to push his feeding tube out - a sign that he is feeling good. We were very happy to see his oxygen at 30% - the lowest we have seen in a week or so. He is up to 45 ml of food this evening and accepting that very well. Ryan's aunts, great-aunt and a couple cousins from Mom's side of the family were in town today and got to meet Ryan and his Grandma B got to see him again. She couldn't believe how big he is since the last time she saw him.
September 30, 2007 - We end September on a high note. Ryan has had a really good day. The doctors and nurses are pleased with Ryan's recovery from surgery and have decided to start the Decadrone steroid to help his lungs. He'll get 2 doses today and tomorrow and then get 1 dose for 3 more days. On Tuesday if he responds as well as he did last time they will pull out the breathing tube and put him on either CPAP or nasal cannula. The nurse and resp tech thought they may go straight to nasal cannula because with CPAP you have to wear a hat or headband to hold the tubes and he can't have anything on his head right now but they will touch base with the neurosurgeon on what he will allow on Ryan's head if they choose to do CPAP. The neurosurgeon stopped by today and is pleased with his head. His feeds are up to 48 ml and at 2 a.m. he'll go up again I believe to 51 ml. His goal is to get to 61 ml and then I believe he doesn't have to have the IV food so we're a couple days away from that and then we might be able to lose an IV and once he can get off the other drugs he will be able to lose all IVs and his PICC line. He weighed in at 5 lbs 4 oz today. We're hoping to get to hold him in the next day or two - keep your fingers crossed!