Ryan's December 2007 Blog
December 1, 2007 - Ryan did well for his first night home. Mom & Dad didn't get much sleep but that was expected. We met with the home health nurse this morning and she will see him 2 times a week. He weighed in at 8 lbs 12 oz. He tried out his swing this morning and seemed to like it.
December 3, 2007 - Ryan has been doing well and definitely has Mom & Dad wrapped around his little finger! We just love having him home and he is definitely loving being held by us. His second night home he did really well but last night he kept Mom & Dad up quite a bit. We're going to have to work on that. He weighed in at 8 lbs 14 oz today and got his first bath at home. He normally loves his baths and massage but today he wanted nothing to do with it. We're going to have a busy week - pediatrician appointment Tuesday, eye exam Wednesday, head ultrasound and appointment with the neurosurgeon Thursday and then his home health nurse comes back on Friday.
December 6, 2007 - The pediatrician appointment went well on Tuesday (he weighed in at 8 lbs 15 oz and 20 inches long) as did his eye exam but today we got the news that we didn't want to hear from the neurosurgeon - the pumping of the shunts didn't work as hoped. There is quite a bit of fluid sitting in the right ventricle on today's ultrasound so the right shunt is not working as expected. Surgery is slated for tomorrow at 7:30 a.m. and is expected to last 2 hours. The plan is to go in and see if they can find what part of the shunt is clogged or not working and see if they can repair it. If they cannot then they will replace the whole shunt. We have to stop feeding Ryan at 3 a.m. and have to be at the hospital by 6 a.m. With how he has handled prior shunt surgeries, we expect he will be in the hospital most of next week. We are unsure if he will go to the PICU or back to the NICU after surgery. We're hopeful the NICU will let him come back since they know his history much better than the PICU. We have had a wonderful time with Ryan this last week and are sad that he has to go back in the hospital but we need to get this fixed. Please say a prayer and cross your fingers that this surgery will fix his issues so he can come home for more than a week.
December 7, 2007 - Mom and Dad didn't get much sleep last night with trying to get Ryan to sleep and then trying to get him to eat before we had to cut him off. The way he was acting it was like he knew something was up. We got him into pre-op at 6 and at 7:45 they wheeled him into surgery. He was in the NICU by 10:30. The neurosurgeon said the shunt was working properly but it was the tubing that goes from the shunt into his abdomen that was the problem. It was working sluggishly and when he was trying to pull it out it wasn't coming out easily. He replaced that tubing and put it in a new area and he said it was working nicely. Now it makes sense why we felt the shunt was pumping nicely but it wasn't draining. Ryan was allowed back in the NICU and he is in an isolation room because he has been to the world outside of the NICU and now has coodies. After they do some cultures and he is in the isolation room 2 days then he can be put in a regular room. We are very glad that he was able to go back to the NICU and nurse Suzi was waiting for him when he arrived. Some of nurses, RTs and staff stopped by to say hello to him and thought he looked much larger than he did last week. He was awake when we got to the NICU and seemed to be doing well other than he is already pissed about the breathing tube. He has been trying to get it out with his tongue and by coughing. Such a stinker but a good sign that he is feeling ok. We're hopeful he won't have any issues like last time but I believe the plan is to leave him on the ventilator a day or two to give him time to adjust to the fluid shift on the right side of his head. If he doesn't have any issues they are talking of him coming home Monday or Tuesday (so Mom and Dad need to catch up on their sleep by then).
About 3 p.m. Mom got a call from Suzi saying the breathing tube was out and he was sucking on his binky. We were so surprised! So we headed back down to the hospital after taking a break. When we got there he was laying in bed sucking on his binky. It was so good to see him back on the Home O2 oxygen. We were there about 3 hours and no problems arose like last time. He was acting hungry so Mom tried to feed him a bottle but he didn't take much and fell asleep in her arms. Dad held for a while and then aunt Lindsey held. He woke back up with Lindsey and was rooting away so we gave her the bottle and he took 2 oz out of 3 from her. Then we changed his diaper and Grandma & Grandpa visited with Ryan. He was still kind of rooting so Mom gave him the bottle and he polished it off. That is very good that he was able to take his bottle having just had the breathing tube in. So as he takes more and more bottles they will wean the IV fluids from him. He seems to be feeling great after surgery and has only had some baby Tylenol and he isn't acting like he is in pain. It does appear the right shunt is working properly this time as the bubble on top of his head (that fills from the first shunts he had) started draining. By the time we left this evening the bubble was basically gone - his head looked pretty normal! So our initial thought of him being in there a week is pretty much not going to happen. We think he'll be coming home in the next day or two!
December 8, 2007 - It is about 7 a.m. and Mom just talked to the nurse and Ryan had a good night. He took his bottles well, they took the IV out, and his head still looks good. He was awake from 10 p.m. to 2 a.m., which Mom & Dad will need to not let that become routine, but now was sleeping. He weighed in at 9 lbs 8 oz - such a fat boy! Mom and Dad got some good sleep last night - it was nice to sleep for more than 2 or 3 hours at a time. When we got down to the hospital, we were told that if the neurosurgeon is ok with it, Ryan would be going home today. We were excited that he was doing so well! He must realize how nice it is on the outside and is ready to go back to it. The neurosurgeon came by and was very pleased. We don't have to go back to see him until the first week of January (as long as no issues arise like infection or the bubble on top of his head filling up). So Mom and Dad ran to get his monitor, oxygen and an outfit and went back to get him. He had staff coming through to see him before he left and we got some great pictures with some of his favorites. He is doing wonderful tonight. He is just hanging out in his bouncy seat looking around. We are so glad that Ryan did so well with this surgery and made such a quick recovery. Now we'll really get to enjoy the holidays!
December 12, 2007 - Ryan has been doing well for the most part since he came home from the NICU again. He has been a little fussy after his shots and it appears that since surgery his reflux has gotten worse. He had a rough night so we call the pediatrician this morning and took him in. He is now on some meds for that which should hopefully make him feel better in about a week. The pediatrician said preemies usually get reflux and outgrow it in about a year. Our only big appointment this week is his hearing test on Friday.
December 14, 2007 - Today has been quite a day. We had to keep Ryan awake and not feed him so he would be extra tired/cranky for his hearing test (he has to be able to sleep during the test). The audiologist administered the ABR test (where they put nodes on his forehead and behind each ear and then play sounds into his ear and expect muscle twitches or some kind of response) and he failed. She got an initial response out of both ears but then could not get a response out of either ear no matter what the decibel. So then she tested his inner ear and got a response out of the right ear but not the left. She then tested his ear drums and they seemed to work properly. So he has auditory neuropathy. Thanks to his brain bleed, high Bilirubin, and having been on many antibiotics, his brain and his ears do not seem to be communicating correctly. We will go back in about 3 weeks for another ABR test. If he fails this test then we will have more testing as he gets between 6 months to 12 months to determine what kind of hearing issue he will have. They said it can be anywhere from perfect hearing to deafness. We really hate it when we get those kind of ranges - that is what we got with the cerebral palsy. We are both on the fence as to what is going on with his ears. There have been too many times when he seems to respond to sound but yet since he has been home there have been sounds that we would think would startle the crap out of him and they don't. So as with the rest of his issues, we'll continue to wait and see how it all plays out.
When we got home from the hearing test we went to try to feed him. He took a couple sips and then acted like it was trying to go down the wrong pipe but then he wasn't really breathing, setting off his monitor and nothing seemed to help - CPR, stimulating him - and he turned blue. Mom called 911 and Dad continued to work with Ryan to get him to breath. The 911 dispatcher had Dad put Ryan on his side and that seemed to help. By the time the paramedics arrived Ryan was recovering. The paramedics took his history and checked him over and thought taking him to the hospital for an x-ray to make sure he didn't aspirate any formula would be a good idea. So Mom and Ryan took an ambulance ride up to St. Lukes Meridian. The chest x-ray looked ok and the doctor thought what happened is when his body sensed the formula going down the wrong pipe, his vocal cords slammed together to try to stop it which caused him to have issues with breathing. There is a name for it but we don't remember what it was. By the time we left Ryan was acting normal again. Mom & Dad are a little shaken but glad he is ok.
December 15, 2007 - Things have gotten worse for poor Ryan. After getting him home last night he was ok but never quite breathing right. We had noticed that his pocket from his first shunts was pretty full again but we attributed it to having him on his back all day (trying to keep him awake for the hearing test) and assumed they would soften back up after having him upright so we were going to watch that today. His belly was also a bit distended but we had attributed it to his reflux/gas issues. He did ok until between 2 and 3 a.m. Then he was setting off his monitor repeatedly and having problems breathing. We debated if we should take him back to St. Lukes Meridian or back to St. Lukes downtown as well as should we drive him ourselves or should we call 911. We put him on his side and he seemed to get a little better. We decided since he seemed to be working so hard at breathing that we'd try an albuteral treatment. At first it seemed to help but then he set off his monitor again so we put him in the car and headed downtown. Dad held him on his side (yes we know it was a no no to not have him in his car seat but his health seemed to warrant it) and it seemed to help and by the time we got to the hospital he was breathing and acting normal again. We sat in the parking lot debating if we should go in or if he was ok. After about 15 minutes Dad put him in his car seat and within minutes he set off the monitor again so Mom drove over to the emergency room door and dropped them off. Basically by the time they got to the door Ryan was apnic (not breathing). They rushed them back into a room and began working on him. To get him to breath you had to stimulate him. They had him up to 1 liter on his oxygen and that wasn't helping much. They called the PICU on call doctor but he was not on site so they called one of our NICU doctors (who also is our pediatrician's husband). He came down and assisted. They put the breathing tube in Ryan and gave him some sedation. The doctor's thoughts on what was wrong were exactly what ours were - RSV, shunt infection or shunt malfunction. The doctor immediately called the neurosurgeon who immediately ordered a CT scan so off to CT we went. Then they tried to decided if we would go to NICU or PICU. The NICU doctor said we had to graduate to the PICU sometime so we got sent there. The NICU doctor was in the PICU with us until the on call PICU doctor could get there and be updated on what was going on. The neurosurgeon came in about 8 a.m. and said all indications on the CT scan point to shunt infection. He tapped Ryan's shunts and sent them to be tested/cultured. The gram stain came back positive for infection on both sides within an hour so Ryan needed emergency surgery to get the shunts taken out of his head and the tubing out of the belly as soon as possible. The belly distention is related to the infected spinal fluid in his belly and the pocket on his head being full is because of infected fluid and possible shunt malfunction. The difficulties in breathing stemmed from the belly distention pushing on his lungs. They couldn't get him into an OR in a timely manner because we could not get an anesthesiologist so the neurosurgeon opted to do the surgery in Ryan's room with the neurosurgeon and PICU doctor administering sedation. Surgery went well but there was puss around some of the VP shunt parts which surprised the neurosurgeon so it was really infected and some of the tubing in Ryan's abdomen was stuck on something which he had a hard time getting out. He had to cut it away and then lost it. They did an x-ray to find it and we saw the x-ray - it is right in the middle of his abdomen. We need to have that tubing taken out as it is also infected so a general pediatric surgeon will use a scope and fish it out in the next day or two (probably Monday last we heard). To deal with the fluid build up that the shunts are no longer able to handle, they put in 2 external drains. Tubing comes out from the top of Ryan's head and drains into an IV type bag. They will test this fluid daily to keep an eye on when the infection goes away. Within the next day we will get the culture back on what kind of infection it is and how to treat it. It can take anywhere from 1 to 3 weeks to treat and then Ryan will have surgery again to put the shunts back in (which we will then again have risk of infection like this that we will have to watch for). They also did a bunch of other tests to make sure we don't have anything else going on and we should get those results back in the next day or two. Needless to say it has been a long, exhausting, emotional day. We have been very scared for our little boy. We're hopeful he will be home by Christmas but are preparing for him to be there until after New Years. The PICU staff has been great and the rooms are very big and it worked out being the best situation to get the surgery done. We're hopeful once his NICU friends know he is there they will come by and visit. For some reason he can't seem to stay away from them although this time his plan was foiled by us being sent to the PICU. Please say lots of prayers. He is such a strong little boy to keep fighting like he has but we need all the prayers we can get. Back on the rollercoaster we go!
December 16, 2007 - So far today Ryan has tested positive for infection in his blood (it appears to be the same staph organism that is in his spinal fluid) and in his urine, which they think is a tract infection. They were scared his was going to test positive for MRSA, which is a bad staph infection but so far the results are saying it is not MRSA, which we are thankful for. They cultured his spinal fluid again this morning and the gram stain on those came back with infection on the right side and not on the left side. This definitely tells us that the infection started in the right shunt, worked its way down the belly and up the left shunt. They consulted an infectious disease specialist and he believes that Ryan is on the right mixture of drugs to battle this but he is going to meet with us tomorrow after they get cultures back which will tell us what exactly it is and we'll go over if he is on the right mixture still. Ryan's belly got more distended over night which was concerning. They did an x-ray and it looked like more infected fluid/puss so the neurosurgeon called the pediatric general surgeon and said we need to get that extra tubing out of his belly today. He went into surgery about 3 p.m. and came back to his room at about 5:30 p.m. There was actually very little infected fluid/puss - maybe an ounce. His abdominal wall was swollen as was his bowel. What they did find is the tubing tightly wrapped around some blood vessels that attach to the intestines so his intestines were purple, which means lack of blood supply which is not good. She said it looked like a tightly wrapped bouquet of flowers. Once the surgeon snipped the tubing and got it out, the intestines turned pink rather fast, which is good. Unfortunately there are two spots that are still purple - one in the upper part of the intestine and one in the lower part of the intestine. This is an issue. Again it is purple because of lack of blood supply. It they don't pink up and get a darker purple/black then that means part of the intestine has died and they will have to cut it out and then he will be attached to a bag that his intestines will dump into for a couple months as they won't be able to reattach the intestines right away and then they can go back in and reattach the intestines together. They will have to watch this very carefully over the next 24 hours. If they don't it could impact if he even makes it through this. Luckily the nurse he has tonight is a friend of ours so we know she will give him extra good care. They may have to go back in tomorrow to look at those problem areas but are hopeful they will not have to. We don't remember what the criteria is for going back in versus not going back in. If they do go back in then there is a chance they will have problems closing the incision back up because it will be too fragile after today's surgery. Because of the majority of the problem being swelling, his belly didn't go down more than 2 cm in size but is slightly softer. They are hopeful they will see improvement there in the next 24 hours. Because of the surgery they expect him to get more swollen, which will worsen his breathing and increase his heart rate. As of right now his body is covered with infection and they have antibiotics on board that are attacking basically any kind of infection you can have. The next 24 hours are probably going to be tough and telling on how this is going to play out. Ryan is fighting the biggest fight of his life and we're praying he is going to keep fighting and get through this. He doesn't deserve to have any of this happen to him. Please continue to say lots of prayers.
December 17, 2007 - Ryan got a little more swollen over night but not a lot so that was good. The surgeon decided that she was going to go in and double check those spots on the intestine. Her worry was tomorrow at 48 hours he would show signs if the organ was dying and become sick but he is so swollen she was worried if she had to remove anything she wouldn't be able to get the organ back in so today was a much better day. After about an hour of being in surgery we got a call saying that she was going to have to remove a portion of his intestine (about 2 to 3 inches). It is in the lower intestine, closer to his colon, which is good - he will be able to take food. They put in an ostomy - not sure if that is right but basically his intestine comes out of his skin and will connect to a bag where his bowel movements will empty out to. He will have this for about 3 months before they will be able to go in and reconnect the intestine. He is so swollen right now that if they tried, when the swelling goes down the sutures would be loose and bowel movement would seep out in to his body, which is not good. So we will have to wait for the swelling to come down. He will swell up a little more over night but then the swelling in his belly should start going down and hopefully by next week that will be better and they will be able to get him off the ventilator. We spoke with the neurosurgeon and the ultrasound today showed a new pocket of fluid in the back of the right ventricle. If Ryan is stable enough he will need another CT scan tomorrow so they can find out where it is and see if they can easily get the fluid drained. I believe he is hopeful once it is drained 1 time it will go away and not be an issue but there is the possibility that it will be an issue and then we'll have to figure out if he will be able to go in and add a 3rd external drain. Tomorrow we will be meeting with him to also discuss our options for re-shunting Ryan. With all that has happened to his belly, the shunts will not be able to drain into his abdomen so there is a new challenge of where can it go. We just hope he says there is something that can be done. We're very scared and upset right now.
December 18, 2007 - Ryan didn't get any more swollen, which is a good thing, and has had a better day. He was wide awake looking around when we got there this morning and was doing that for a couple hours. Then he would start crying and it would just break our hearts because we know he hates the tube, doesn't feel well and wants us to hold him so we'd have the nurse give him something to settle him down. They added two new antibiotics to make sure he has everything he needs on board to make sure that he doesn't get any other infections. He had a CT scan and then the neurosurgeon came up and went over it with us. The new pocket is a cyst of fluid on the right side very close to his ventricle. It would be too simple for it to be joined with the ventricle so it would drain through his external drains but of course that isn't the case. So with the help of ultrasound, the neurosurgeon put a needle into that cyst and pulled out the fluid. He got 41 ccs before he didn't get any more. That is quite a bit. There was about 1/4 of the cyst left but he wasn't getting any more fluid out of it so we are hoping what is left is just air and that the cyst will collapse. An ultrasound will be done in a few days to check it. If it fills again, then he will need an external drain on it as well but the neurosurgeon is hopeful this is an isolated incident. We also went over our options for reshunting Ryan. There aren't many. Until his intestines are ready to be put back together in 2 to 3 months and he has had a couple months to heal from it, we cannot try to reshunt and have it drain into his belly. We are about 5 or 6 months away from trying that and then there is increased risk that his belly will not absorb the fluid anymore like it was. So we need a temporary solution. We basically have two options - drain the shunts into a kidney or drain it externally with a port that looks like the ports they use for treating cancer patients. A drawback to each is the fluid is lost to the body. When it cannot reabsorb it he will lose electrolytes & salt that his body needs so we would need to constantly test him and give him stuff to get those levels back up. A bonus to draining externally is we can see what and how much is coming out and we can test it at any time. Another drawback for this one is we could have problems with cross contamination between the external drain and the ostomy bag. Mom & Dad would have to be extremely careful. A drawback to the kidney is not a lot of tubing can be left so if he grows much during those months the tubing could pull out plus you can't tell how much is draining nor can you test it easily like we can with the external drain. No decision has been made yet but Mom is leaning towards the external drain. We are about 2 weeks away from putting in these temporary solutions so we will be chatting more with the neurosurgeon over the next couple weeks. Long term solutions are trying the belly and if he won't absorb the fluid then we'll try the gallbladder. If this one doesn't work then we're pretty close to being out of options and it could get really bad but we are about 6 months or so from this so we'll not worry about this one for now. Our focus is now getting his infections gone, the belly swelling down and getting him off the ventilator. We also met with the infectious disease specialist this evening. He said it looks like we caught the infection in the blood rather early. Apparently on the first culture they took of Ryan while we were in the emergency room did not come back with infection so it was in the hours after that that it appeared. Don't know if it makes a lot of difference but it is good to know he didn't have that for very long so hopefully that means we did catch the shunt infection early. The gram stains on the spinal fluid tested this morning did not come back with any bacteria but now we have to wait until tomorrow to see if anything grew in the cultures. We have been seeing the numbers coming down so we are on the right path and the doctors are very optimistic. Please continue to pray for Ryan's body to heal and no more infections. We really need his body back in tip top shape so when we get to that long term shunt solution it will work in the belly or gallbladder and we won't have to even think about what if it doesn't work.
December 19, 2007 - Ryan has had a better day. No more belly swelling and they have been able to wean some of his ventilator settings. They are hopeful that he will be able to come off the vent in a couple days. He has had some good awake periods and hasn't thrown too many fits. He looks a little less puffy and his color is looking good. The fluid they drained from the cyst yesterday came back without infection - good news. The culture of the spinal fluid from the left ventricle came back without growing any infection - more good news but the right side was still growing stuff but the volume is less in the cultures. At least it looks like we are on the right track. The surgeon came by to look at his ostomy and is pleased. They say it may take a week for his belly swelling to go down so now we have a lot of wait and see...As always, please pray for our sweet boy.
December 20, 2007 - Ryan didn't tolerate the weaning of the ventilator so they stopped over night. They had him on an APRV vent which keeps his lungs inflated and lets him exhale when needed. Keeping the pressure in his lungs has helped him not be in much pain with the swollen abdomen. This afternoon they decided to switch him to the conventional ventilator and see what he did - his numbers got way better. Everyone is pleased with that. So the goal of getting him off the vent tomorrow is out the window but we're keeping our fingers crossed that he can be off of it by Christmas. When we arrived today they were doing MRSA precautions again (gloves, gowns, etc.). We asked the nurse if he had MRSA or if it was just precautions because something came back that they were wanting to watch on the cultures - she didn't give us a good answer. The doctor came in and said he had MRSA and that it was in his blood. Nooooo! Mom & Dad were upset by the news. He also said that really Ryan was not any sicker but would need a new antibiotic. So while that sunk in the infectious disease specialist came by and talked to us about it and all the antibiotics Ryan is on. He made it sound like the MRSA Ryan has isn't that bad (we haven't heard good things about MRSA). Then he went out, looked at a lab report and came back in. He said the report said Ryan does not have MRSA. Yeah! You cannot imagine our relief. It is just another type of staph infection that they think he got from his PICC line. He also said the drugs to fight the spinal fluid infection would take about 3 weeks via IV so we will be in the PICU awhile. One week almost down so 2 more to go. The surgeon that did the ostomy came by and thought things look good although one of the sutures is pretty red so she is worried some of his infection got stuck in the sutures. She may have to open that up but is hopeful he is on enough antibiotics that he will be ok. Ryan is making progress with his ostomy. He is starting to push stool through it, has had some gas and they are starting to hear bowel sounds - very good news. The surgeon figures it will still be a few days before they try feeds. The neurosurgeon came in and said because the cultures of the spinal fluid from the right ventricle keep growing bacteria/infection that he needs to take out the external drain because he is afraid it is carrying around the infection so he took out the right drain this evening. Luckily Ryan's ventricles are very drained so he will be able to go a few days without a lot of fluid build up. They will do an ultrasound Saturday to see how he looks. They are hoping that if his ventricle doesn't build up fluid very fast the antibiotics will really be able to kick in without the drain in. Then after a few days they can put that drain back in. Mom & Dad have gone through the rollercoaster of emotions today and are pretty wiped out. Ryan seemed to be feeling a bit better today - was a bit more feisty and a lot more awake. We're hoping he will continue to feel better and get better as the days go on. As always, please pray for our little pumpkin.
December 21, 2007 - Ryan is making some progress. His belly swelling is coming down (it looks a lot better to Mom & Dad) and his cultures on urine and blood have come back negative for infection! Those antibiotics are doing their magic. They have been able to wean the ventilator settings and are hopeful that he can come off the vent tomorrow. It will all depend on how the head ultrasound looks in the morning. If his ventricle isn't filling that fast then the tube will come out. If the ventricle is filling fast then it will stay in a couple more days until the neurosurgeon can get a new external drain put in. They want to wait as long as possible to give the antibiotics an opportunity to work as much as possible before sticking a foreign object in there. The surgeon came by and was pleased with his ostomy. We're hopeful that by Christmas he will be off the vent, back eating formula (from a pump probably not a bottle), and that we'll get to hold him - that would be the best Christmas gift we could imagine at this point! As always, please pray for our little guy.
December 22, 2007 - Ryan got the breathing tube out! He is back on nasal cannula and his arms are not restrained anymore as well. He is a much happier boy. We have not seen the ultrasound but it must have been good enough that the neurosurgeon felt he would not have to get a drain into the right ventricle in the next few days. It sounds like the cyst has begun to fill back up so our hope of it just going away may not happen. It must be getting filled from the ventricle somehow. His belly swelling seems to have come down more. It is very funny how the breathing tube effects your vocal cords. Ryan would try to cry but only a couple squeaks would come out and it took a few hours to get the sucking coordination back. He was very alert and looking around today. He must be feeling better because he has been giving Mom the what for. He would not look at her for anything and then if she got in his eye line he would at first just move where his eyes were looking but then if she got in his eye line again he would just close his eyes. Would he do this with Dad? Of course not! He is back to being our little stinker. We found some pictures on our camera back from the 13th & 14th before he got so sick and we have also included a few from today.
December 23, 2007 - Today was a day Mom & Dad needed - they got to finally hold Ryan after what seems like forever but really is only a week. We each held him for about an hour. It was so nice. Hopefully it was as good for him as it was for us. His voice is slowly coming back. Not much else new today - just more of the same - wait and see...
December 25, 2007 - Merry Christmas everyone! We hope everyone has had a wonderful Christmas. Ours turned out not how we had planned but we got to spend it with Ryan and that is all that matters. Him being ok is the best Christmas gift we could receive this year. Mom & Dad opened Ryan's gifts at home and then went down to the hospital. Grandma and Grandpa met us and we had Christmas dinner in the hospital cafeteria. The prime rib was actually really good. We had a few gifts at the hospital along with the gifts Grandma & Grandpa brought so Dad opened those while Mom held Ryan. Ryan did well - lots of clothes and lots of toys and none of it mattered to him - he just wanted to be held. Since we got to start holding him on the 23rd that is all he has wanted. We held him for a total of 4 hours on Christmas Eve and afterwards he was so upset about being put back that the nurse finally had to give him something to settle him down. Hopefully that didn't happen tonight after we left. We had a little scare on Christmas Eve - the gram stain on the left ventricle spinal fluid came back positive for infection (when it had not in about a week) so the neurosurgeon came by and flushed the external drain line hoping there was just a little colonization of bacteria where they pull out the samples. They tested again today and the gram stain came back negative for infection - whew! We were worried the other external drain would have to be pulled. I'm sure they will test again Wednesday and I believe we have another head ultrasound Wednesday or Thursday to make sure the right ventricle is not filling up with fluid too fast. The pediatric surgeon came by and looked at the ostomy and is pleased. There is an x-ray Wednesday morning and if all looks good Ryan will get to start feeding. They will probably start him off with a feeding tube until they see how his body handles the food. He is definitely ready. Today he was rooting a lot and the binky only worked for so long before he got tired of it. We have got our fingers crossed!
December 26, 2007 - Well Ryan did not get to start eating today but he did get to start having some Pedialyte. He gets 20 ml every 6 hours to see how he does. The surgeon is doesn't want to start feeding him yet as he is putting out too much in his ostomy bag. Ryan was not very coordinated with taking the Pedialyte (he gets to take it via a bottle). Dad tried to get him to take it and he didn't seem very interested. About an hour later after he was put back in bed Mom tried and he took it. Mom & Dad held him for a total of 4 hours today, which he loved, and they were able to get him back on his Home O2. He was doing great on 1/16 of a liter when we left.
December 28, 2007 - Yesterday the surgeon decided to add a little formula into Ryan's Pedialyte. We think that made a big difference as his inhaled it. He was still getting the 20 ml. This afternoon the surgeon let the amount increase to 30 ml and he inhaled it again. He got to start wearing clothes again yesterday so we brought in some of his own clothes to wear. We held him for about 4 hours yesterday. When Mom was holding him he had to have his hand on her chin. Just needed that touch I guess. He was so cute today. He was a smiling machine while his eyes were open. He normally smiles while asleep. We tried to capture it on film but were too slow. He was also working on sticking the lower lip out in a pout. Oh it was so cute. The nurse and us were just laughing. He would stick that lower lip out like he was unhappy and then he would have a big smile on his face. Precious! We were there 8 hours today and held him for about 6. He was a happy camper. The ostomy nurse came by and had Mom change the ostomy bag. Mom was a bit nervous but didn't do too bad. We'll just see how long it lasts (if done well should last 2-3 days). We were there when they did a head ultrasound and his ventricles are still pretty small but the cyst on the right side is bigger again. We are assuming it must be filling from the ventricle or could be part of the ventricle that had the walls collapse which created a new pocket - we're not sure which and I'm not sure if the neurosurgeon is sure either. We didn't see the neurosurgeon today but expect to catch up with him in the near future as next week should be surgery to put in the temporary shunts. Ryan's antibiotics for the spinal fluid infection wrap up on January 6th so the shunts need to be in a couple days before that. Then once we're off antibiotics and the shunts are in, the only thing keeping us in the hospital is being able to eat. We hope he gets better and better with that and that we'll be home not too long after the 6th!
December 29, 2007 - Today they increased Ryan's food to 40 ml and most of the feedings he inhaled it. The feedings where you wake him up to eat he wouldn't eat very much, which I probably wouldn't eat much either. The neurosurgeon came by and we now have a plan. On Monday the left external drain will come out so this means there will be no hardware in Ryan's head. He will also tap the cyst on the right side. Then on Thursday a head ultrasound will be done to see how much fluid is in the ventricles. If there is enough, surgery to put the temporary shunts (either in the kidney or external) will be Friday. If there is not enough fluid then every few days we'll have another head ultrasound to determine when so that means surgery could be weeks down the line if the fluid does not build up very fast - the longer he doesn't have any hardware in his head the better. The neurosurgeon would like Ryan's head to be healed so that he does not need any shunts so he said for us to do the no shunt dance. I'll take no shunt prayers too so please pray for Ryan's head to be healed enough that he won't need anything!
December 30, 2007 - Ryan is continuing to do well with the 40 ml of formula/Pedialyte. Mom & Dad got to the hospital for his 8 a.m. feeding and he inhaled it. Then around 11 we got a little treat. Fresno State & Georgia Tech are playing in the Humanitarian Bowl tomorrow and today some of the players were visiting pediatrics/PICU. Georgia Tech stopped by first with their mascot, a player and a cheerleader and visited with us. RT Becky took a picture with the PICUs Polaroid so we've scanned that in. Ryan had been asleep at first but either heard/sensed the commotion and woke up. He was very intrigued by the Georgia Tech mascot Buzz. Then about 5 minutes after Georgia Tech left us about 5 or 6 Fresno State players came in and visited with us. They had a photographer with them so we are not sure if we'll end up on the Humanitarian Bowl website or in the local newspaper. We'll let you know if we see anything. We looked tonight but nothing was posted. The Fresno State players left Ryan a hat with some autographs on it. Ryan was also awake with them and it was rather cute when one of the players waved hi to Ryan and Ryan moved his hand like he was waving back. After the players left, Mom & Dad had to leave for a while (Mom was getting a much needed massage and Dad had to help a friend move). When Mom came back later this evening the nurse said Ryan was cranky all day after we left. No one is sure what that was about - hopefully just a cranky day and not that he wasn't feeling well. They put Ryan in Mom's arms and he was a pretty happy guy for the 3 hours she held him. Hopefully he is not being a holy terror to the night nurse. The external drain comes out around 10-10:30 tomorrow morning and then later in the day we will be moved from the PICU to the Pediatric unit. We have never been out of ICU before so we're excited he is well enough to be moved!
December 31, 2007 - About 1 p.m. the neurosurgeon drained the cyst on the right side and removed the external drain on the left side. He drained about 24 ccs from the cyst so it was smaller than it had been last time it was drained. This time he thought it collapsed a lot more so we'd like to hope it will go away but we'll see. We held him for 3 1/2 hours before the procedure and than about 6 hours after the procedure. Toward the end he got a little fussy so we don't know if he got tired of the holding or if he was still hungry. The nurse asked the doctor if they could give full strength formula (instead of watering it down with Pedialyte). He said try it and Ryan loved it. Hopefully this will continue into tomorrow.