Ryan's February '08 Blog
February 2, 2008 - Ryan has had a great couple days. He has been happy and smiling. He was awake a lot today. Hopefully he will sleep tonight to make up for it. He weighed in at 12.4 lbs yesterday. He is up to 21 ml per hour on full strength formula and still taking 10 ml by bottle twice a day. He got his RSV shot yesterday and should be getting his 6 month shots soon.
February 4, 2008 - Ryan had a great day yesterday but has been a bit fussier today. We think his head is starting to bother him. Yesterday he was up most of the day and had a great time playing with Dad. Each day he is starting to talk a little bit more. Yesterday while emptying Ryan's ostomy bag we noticed it needed to be changed. When Dad took it off, we were all shocked at what we saw. His poor skin under the bag was red and irritated - it looked horrible. Mom & Dad immediately had had it with the ostomy nurses. From almost day 1 we have not been impressed with the ostomy nurses. There was no consistency between them and none of them would listen to us or the surgeon who said she wanted it snug around his stoma so the skin would not be exposed because stool I believe is acidic and will break down the skin and it will be like a burn. We have dealt with having to use them but really didn't want to use them. After yesterday we won't be using them ever again. Luckily Ryan's surgeon was on the floor when this happened so she came in to look at it and said he basically has a 2nd degree burn. She said she planned to call the ostomy nurses and let them know of her unhappiness. We made it known to the doctor that those nurses would not be touching our child again. This morning we had a care conference with the patient care coordinator, dietician, physical therapist, social worker, child life specialist and nurse. We told them of our unhappiness and they said they would let the ostomy nurse supervisor know. We then met with the director of pediatric nursing and told her of our issue and she had actually been in the room helping the ostomy nurse last Wednesday when this all took place. The gal basically didn't use paste around the hole opening and just used the sticky stuff on the bag and that is why it got on to his skin. It is very frustrating that this is their job - to know that you have to put the bag snug around the stoma so the stool does not get on the skin and they can't even do it right. I cannot tell you how unhappy Mom & Dad are with these nurses! This could potentially push out his take down surgery because we now have to wait for this skin to heal. Ryan got a head ultrasound after all of this and, to Mom, it looked like he has accumulated a bit of fluid. Mom met with the neurosurgeon this evening and he said from last Monday's ultrasound to today's there was a big change. We decided with him now starting to get cranky and was also starting to have sunset eyes (where he tends to look down because of the pressure from his head) that we should not hold off surgery much longer. Tomorrow Ryan will have an abbreviated MRI and then Wednesday the plan is to put the subgaleal shunts in. The neurosurgeon will get back to us tomorrow with a time. We are all very pleased that Ryan will have gone 3 weeks with no hardware in his head. We all wish it could be longer but we don't want him uncomfortable for very long. He will get his 6 month shots tonight so he is over any fevers by surgery. Once we get through this surgery and he has a day or two to recover (with hopefully no setback) and can get back on his feeds, we should be off the IV nutrition by Friday so technically he could go home by next week until the stoma take down surgery at the end of the month. Wouldn't that be wonderful? We aren't holding our breaths but will cross our fingers that this may happen! They are starting to let Ryan take 20 ml by bottle 2 times a day. Tonight was the first time. He did ok but it took a little work but in the end he took it all. We will continue to work with him and get him back on track!
February 5, 2008 - Ryan got his shots last night so that combined with his head, he has not been feeling well today. He has had a low grade fever which should be gone tomorrow. Mom carried him down to have an MRI and he did good with that. He enjoyed walking around and seeing new things - he was very curious. He slept most of the afternoon, which was fine by us since he isn't feeling well and he didn't sleep much over the weekend. Nurse Suzi popped in to see Ryan before a meeting. Ryan had been sleeping and Mom & Suzi had been talking and he never woke up. Then Suzi stood next to him and talked to him and within seconds his eyes popped open and he looked for the familiar voice. She kept talking to him and and he realized she was on his right side and turned to her. I think we both agree we think he can hear. Mom met with the neurosurgeon late this afternoon and surgery is tomorrow at 11 a.m. Afterwards we'll head back to the PICU. We looked at the MRI and the left side seems pretty straight forward. The right side is a different story. Mom, just looking at the images before the neurosurgeon explained them, knew the right side is really bad. The ultrasound did not do justice to what is going on in his brain. He has so many little pockets of fluid that we have no clue if they are connected. And mixed in this is the PVL brain damage (cyst like voids where the brain had dissolved from the brain bleed) mentioned in prior postings. Some of these pockets are PVL that have come to accumulate fluid. His ventricle walls are raw from all the infections and the PVL walls are even more raw, which is a big problem. If the neurosurgeon puts the shunt into a PVL space and it collapses around the catheter, it could block it and then we have no draining. So the plan is to go in and put the shunts into the biggest areas of concern. He won't be able to get them all so we will have to continue to monitor them with ultrasound and we'll have to pray that the right side shunt will even work. The neurosurgeon said based on what he saw he is surprised Ryan is doing so well. Mom is not sure if that means neurologically or pressure on his head. If it is the pressure on his head, blame that on Mom's genes. High tolerance to pain runs in the family. If it means neurologically, then we're glad he is doing well. Please say a prayer for our little boy. We're definitely scared about this right ventricle.
February 6, 2008 - Ryan spiked a fever of 104 during the night. This alarmed his pediatrician but not the neurosurgeon or PICU doctor. They attributed it to the shots. Luckily by this morning his temp was back to normal. When we got to the hospital this morning Dad changed Ryan's ostomy bag. We were very surprised and happy to see how much his skin had healed from Sunday. Dad does a much better job than the ostomy nurses! Ryan weighed in at 12 lbs 11 oz this morning - what a big boy! We gave Ryan a breathing treatment and then got ready for surgery. We had expected Ryan to be in a foul mood because of hunger but he was in such a good mood this morning. We took him down to pre-op at about 10:15 and they wheeled him into surgery around 11:45. He made it up to the PICU around 3 p.m. His RT and nurse were happy to have him back in the PICU. We thought the surgery was pretty quick so we were a little nervous but the neurosurgeon said it went well. Left side was no problem and the right side was easier than he had thought it would be. He was able to find his tracks from the last time when he had to tunnel through the scar tissue. He did not hit all the little pockets - maybe just a couple (and Ryan has quite a few) but he is hopeful that these pockets are in communication with one of the pockets he did put a catheter in. We'll see on the ultrasound in a few days if it is draining or if it continues to grow. The shunts drain from the back of his head up to the top of the head. Last time Ryan ended up having a bubble on top of his head. This time it is a little bit more in the back and again it is between the scalp and the skull. Ryan did very well during surgery. We had them bring him up on the ventilator since we've had so many issues in the past but he did really well and we were able to pull the breathing tube out at 4 p.m. We left at 9 p.m. and he was still doing well. As long as the binky was in his mouth he was happy for the most part. He was starting to get fussy before we left so they gave him morphine but he still wasn't settling down so they gave him a little bit more. We're not sure if he is in pain or if the fluid shift is bothering him or if he is just hungry (they stopped feeding him at 3 a.m. but gave him Pedialyte until 7 a.m. so it has been a long time and that boy likes his food). They were starting his feeds up again when we left. They are going to start at 10 ml per hour for 4 hours and see what he dumps in his ostomy bag. If he does good then they will go up to 15 ml. After another 4 hours if he is still doing well then they will go to 20 ml per hour and after another 4 hours if all goes well then they will go to 23 ml. We are relieved that surgery went well. Now we have to pray that the shunts will work, not get clogged, have no infections, and that those fluid pockets are communicating and will drain. We continue to ask for your prayers for our little pumpkin!
February 7, 2008 - Ryan didn't have a great night. He was fussy (which could have been because of fluid shift) and didn't want to go to sleep. He would quiet down if someone held him or talked to him. They said he didn't seem like he was in pain - just wanted attention. Luckily he did sleep most of the day. Hopefully he will sleep tonight as well and not get his days & nights mixed up. This morning he got a blood transfusion because his hematocrit was low. That made Mom wonder if he was still getting his vitamins with iron. Mom had the nurse check and he hadn't received them since 1/18. That could be part of the reason why his crit was low. By this evening his crit was up and looking good. The doctor was worried that maybe there was more bleeding in the brain so he ordered a CT scan. Dad took Ryan down and Ryan enjoyed the ride down - looking around very curiously. They were up to the 23 ml of full strength formula by 6 a.m. this morning but by about 6 p.m. Ryan had dumped over 100 ml out of his ostomy bag. Just before he hit this number the doctor had discontinued the IV nutrition. With hitting this 100 ml number in a 24 hour period, guess what? We go back on IV nutrition and drop his feeds back to 5 ml per hour. UGH! About 5:30 tonight Ryan started setting off his monitor for too high of respirations (or breathing too fast). He didn't elevate his heart rate so none of us were sure what was going on. Then the nurse realized he hadn't urinated for 6 hours so maybe this was playing a part in him breathing too fast so she grabbed a bladder scanner (which is a type of ultrasound machine that estimates how much urine is in the bladder). She checked 4 times and it said he had between 150 and 220 ml of urine in his bladder. So she put a catheter in and drained out his bladder but only got 45 ml. Hmmm.... So they got another bladder scanner from a different area and scanned again. One said 20 ml and the other said 403 ml. Not very consistent so they decided to ignore it. They are going to use lasics tonight and that should help him pee a lot. After draining his bladder and giving him some Tylenol with Codeine his breathing settled down. This evening the PICU doctor told Mom that the radiologist report was not back yet on the CT scan but that there were post operative changes and there was air in his brain. What? So Mom waited for the neurosurgeon to come by. He thought his head looked good and was glad respiratory wise we were doing good. He asked her if she had seen the CT and so she told him what the PICU doc had said. He was like what? So we went to look. He pulled up the MRI from Tuesday and the CT scan. There is a little pocket of air but he thinks this is left over from one of the cysts and he didn't think it was a big deal. We next looked at how the head drained and it looked wonderful! All those nasty pockets on the right side that we were scared about - drained. There is one area on the right that did not drain but that seems to be because the shunt catheter didn't have holes right there because it was too close to the exit site. We will watch this spot. Overall - the neurosurgeon is the most pleased Mom has seen him with Ryan. Oh let's hope this continues. Please keep praying for no clogs or infections! We're hopeful that after another couple days of recovery Ryan will bounce back and be back to feeling good.
February 8, 2008 - Ryan has had a great day. He slept all night and slept quite a bit today. He had a great wakeful period this evening with Mom and Dad. Dad had him trying to laugh which was so cute. We got to take him for a little walk around the floor for a few minutes and he seemed to like that - was very curious about everything. The lasics overnight helped him pee a lot and he has had a few good diapers today. He did well with feeds today and so they were able to get back up to 20 ml per hour (and turn off the IV nutrition) but his output for a 24 hour period hit the limit so they plan to hold the feeds at 20 ml and not go up tonight but we do not know if they will go down on them and start the IV nutrition again if he puts out much more. The neurosurgeon came by and is still pleased. He had planned to have an ultrasound done Monday but was so pleased that it is on hold right now. The pediatric floor and PICU were hopping tonight - basically full so they told us if they get anymore PICU admissions we will get sent to the oncology floor again. We were hoping not to go back and just come straight home from the PICU but that may not happen. The nurses don't want him sent back to the oncology floor yet but we'll see what happens.
February 9, 2008 - Ryan has had a great day! Ryan is doing so well they booted us out of the PICU and back over to oncology. Darn! So Mom worked on moving all of Ryan's stuff over while Dad entertained him. He was in such a good mood. Doing more smiling and talking. Dad carried him over to the new room and Ryan enjoyed the walk. He was looking around and happy as could be. We got all settled and Dad continued to hold him and we got some more cute video of him. Grandma & Grandpa came and each held him and got to see him in action with being in a good mood. The second video is where Grandpa about had Ryan asleep. It was very cute. Then we put him in his bouncy seat so we could go to dinner and he got pissed off! He let us know about it so it took a bit to settle him down. Then he was back in a good mood smiling and talking to everyone. Then we put his mirror in front of him and he was content as could be so we slipped out. His head is doing great and his is doing ok with his feeds. His output is still a little up but the doctor decided to let it go and see how he does tonight. Hopefully we'll have another day tomorrow like today!
February 11, 2008 - Ryan turned 3 months adjusted age yesterday. He had another good day yesterday although he was not wanting anyone to mess with his head. We're hoping it was only because he hadn't had any Tylenol most of the day so he might have been tender. He was much better today about it. He is definitely learning that he doesn't want Mom & Dad to leave or when he sees one of us he wants us to give him attention. Last night when we got him back in bed to get him settled so we could go home, he through a big fit. Finally Dad had to pick him up and hold him. Dad held him for over an hour until he was so asleep that he wouldn't really notice being put back. This morning when Dad showed up Ryan was having some good quiet awake time but as soon as he saw Dad he stuck out the pouty lip and started fussing so Dad picked him up. When Mom arrived after work he was in the swing and happy as could be. Mom talked to him and then went to the restroom and as soon as she was out of his site he started crying. She hurried to get back to him and he was giving the pouty lip. The nurses aide came in to help move the swing as Mom was taking him out and getting over to the rocking chair and Ryan was still giving pouty lip and she was laughing. She said this morning he was doing that when she was giving him his bath and she couldn't help but laugh at him because it was so cute. What isn't so cute is Ryan is dumping his food. His output in his ostomy bag has been quite a lot. The neurosurgeon stopped in yesterday and was pleased with Ryan's head but was worried that because during surgery Ryan was on some antibiotics that it killed the good bacteria again and that it could be causing C Diff, which is an infection of the intestine. UGH! We don't need any more infections! So they ran a test and the results came back this morning being negative for C Diff - thank goodness! The hope is his bowels are still recovering from surgery (waking up) but don't know for sure. The GI doc was to be called today by our pediatrician. Dad will meet with her in the morning. They went to half strength formula yesterday and lowered the rate and he still dumped a lot so today he was cut off of food and back on TPN & lipid IV nutrition. Tomorrow they are going to start slow again with quarter or half strength formula at 5 ml per hour and then work our way up again. Our hope of getting Ryan home for a couple weeks before the next surgery is fading away. We can't tell you how much we really want him home. We'd appreciate a prayer for his bowels to start absorbing food and get back to working.
February 13, 2008 - Ryan was a happy boy yesterday for most of the day but he slept a lot during the day. In the evening with Mom, he was a little fussy but he was rooting so she attributed it to being hungry and the binky was not satisfying his need. When Mom left he was asleep but apparently from about 11 p.m. on he was up and down all night and fussy. Mom got to the hospital about 7 a.m. today and immediately noticed Ryan's heart rate was really high and he seemed to be breathing hard but his saturations were good. He was really fussy too. She held him for a little bit to calm him down and then put him on his boppy for some tummy time and he fell asleep. Dad got to the hospital about 8 a.m. and Mom filled him in on that she thought he wasn't feeling right so we need to watch him. After Dad had been there a while he thought Ryan was running a fever so he had the nurse check and he was 102 - oh no here we go again! They did urine and blood cultures. They had done a CBC test and that came back with his numbers out of whack so they called the neurosurgeon. The thought is infection and our options are head, blood (from the PICC IV line) or intestines. The neurosurgeon came by and tapped the left side to get spinal fluid to culture. When Mom arrived after work they hadn't received the gram stain results yet so the nurse was on the phone with the neurosurgeon. He called the lab and got the results that the gram stain was negative. Whew for now but that does not mean it is not in his head. The cultures could come back in the next day or two saying there is an infection in his head. He was running a temp of about 100 when Mom was there but it finally got back to normal before she left. He was not as fussy tonight with her and other than wanting his binky and acting hungry he seemed almost normal. He was very curious of sounds and watching the nurse when she changed his IV fluids as well as gave a few smiles during times when he didn't want the binky. The urine test should be back tomorrow afternoon, the blood cultures could take up to 72 hours and the spinal fluid cultures could take up to 72 hours. Oh let's hope it is not an infection and if it is one - not in his head. He is still dumping a lot into his ostomy bag so we're concerned with that as well. They are still keeping him off of formula until his output is down. We may need to get the GI docs back over to see what else could be going on. It has been a week since surgery, we would think that his body would be back to normal (whatever that is) by now and that he should not be having these issues.
February 14, 2008 - Happy Valentine's Day! Over night Dad checked in on Ryan to find out that one of the tests returned with results of an infection in Ryan's PICC line. He was started on antibiotics and now we will see if they will have to remove the PICC line or what will happen. He had a better night and his temperature only got up to 99 so let's hope things are settling down. The infection is a staph infection again and it not only came back positive in blood they drew from his PICC but also blood they drew from his other hand that had no IV. This morning we took Ryan down to radiology where they put dye into his PICC line and x-rayed him to see if the end of it had a colonization of infection. It was pretty interesting and luckily no cells were attached to the end of it so we thought great we won't have to pull it. When Mom came back after work she was told Ryan is probably having surgery on Monday to put in a Broviac. What??? Apparently the infectious disease doctor wants the PICC line removed just to be safe. Ok but then we have a challenge of getting enough nutrition through a peripheral IV so they need to have some other solution. Apparently the pediatrician, infectious disease doc and pediatric surgeon all spoke and determined a Broviac would be the best solution. It would give us long term access for nutrition, giving medication and pulling blood with less risk of infection. He would probably keep it until June until we're sure all is ok. I believe this is similar to a chemo port for cancer patients. Basically they will go into one of the major arteries in the chest and come out at some other location under the skin. Normally they bring it back out in the chest up by the shoulder or neck. Mom spoke with the neurosurgeon this evening and he said they cannot put it anywhere from nipple to nipple on Ryan's chest as he needs that space for shunting so he will need to speak with the pediatric surgeon and get that understood. Us and the pediatrician are wondering why we are waiting until Monday to do this, which she will be asking the surgeon today I believe. We believe it would be better to put it in Friday or Saturday so he doesn't go a lot of days without certain types of nutrition like protein. We are also concerned with his dumping in the ostomy bag. His numbers are coming down but he is still dumping a lot. There is talk of if his numbers come down again today and tomorrow (he has to be under 100 ml in a 24 hour period which he was yesterday), then we might try 5 ml of Pedialyte and see what he does. The GI docs had told us at our first meeting that they usually would scope a patient that was having issues like Ryan but where he had just had surgery they didn't want to do it. If they have a valid reason and have something that they might be looking for then we may ask them to scope him while he is in surgery getting the Broviac. The pediatrician is going to call them tomorrow. Then we're hoping the pediatric surgeon that did the ostomy will come by Monday to review his belly to see if she has any other thoughts or concerns regarding take down. We do not know if she will be able to put his intestines back together if we don't get Ryan absorbing some food. It may make things worse or she may say it may make things better. Right now his take down surgery is on the calendar for March 6th or 7th with the next shunt surgery March 20th or 21st. This could push out depending on what the pediatric surgeon says. Ryan does seem to be feeling better, which is good and has not had a fever today. His head looks good and the neurosurgeon is pleased so no ultrasound until next Wednesday. Today has not been the type of Valentine's Day we expected but at least we got to spend it with Ryan.
February 15, 2008 - Ryan has had a quiet day today. He has been happy - definitely feeling better but acting so hungry! He weighed in at 12 lbs. 14 oz. In the last week he has started kicking and it is so cute. We finally got it on camera. The pediatrician talked to the GI doc and no scoping will be done on Monday. Ryan's output has come down so maybe this weekend we will get to try a little food. The neurosurgeon stopped by and said Ryan's pocket of fluid is feeling like it is swollen like he has some edema or swelling caused by fluid in the body's tissues. I don't think he liked it but he was ok with it - we'll have to watch it. Hopefully this weekend will stay quiet.
February 16, 2008 - Ryan had a good day. He had some good wakeful periods and his output was down out of his ostomy bag that the pediatrician started him on Pedialyte. 2 ml an hour (which is very little) but we'll take it. Today we needed to change his ostomy bag so we decided to throw him in the tub while it was off. He wasn't too happy about that. Then as we tried to dry him off and get his ostomy bag on, he peed all over the towel. Then to add to his misery we put lotion on his and he was giving Mom a piece of his mind as the pictures show. Then we did some tummy time and he did great at lifting his head. Dad did some skin to skin with him (like we were doing in the NICU) and Ryan enjoyed it. He was happy, kicking and talking. It was very cute. Then he snuggled in with Mom and took a nap.
February 17, 2008 - Ryan had another good day. He was napping when we got there but when he woke up he was up about 8 hours (with one 30 minute power nap) before we finally got him to sleep. Of course when we put him back he woke up but he was so tired we don't think he stayed awake very long. He was happy most of the day with a few little fussy times. One was while the nurse was putting flush through his IV. We all wondered if his IV was going back but it looked ok. We'll see if it makes it to tomorrow. Ryan did some skin to skin with Mom and he seemed to enjoy it like he did yesterday with Dad. He did some great tummy time working on lifting his head. We met with the pediatrician and she touched base with the neurosurgeon about the Broviac. Tomorrow morning early she will page the pediatric surgeon and we'll get this thing rolling. Ryan is not on the surgery schedule yet but we're told the schedule is pretty open so we should be able to get in in the afternoon. We'll probably be put back in PICU for a few hours and then go back to oncology.
February 18, 2008 - Well the IV didn't last. Early this morning the nurse said it infiltrated so now his arm is puffy and as of 5:30 they were still trying to get an IV in. UGH! Mom & Dad were questioning his IV yesterday and his nurse checked it but we probably should have had them do a more thorough check. We think that does explain most of his fussiness yesterday. Poor thing. If it is not one thing it is another. We'll update later with how the events of today unfold...We got to the hospital just before 8 a.m., hoping that they had put a new IV in. There wasn't one. They tried 6 or 7 times and couldn't get an IV in so they stopped so he had not been getting nutrition, fluids or medicines since the early a.m. hours. We either had to get Ryan on the OR schedule fast or call someone from PICU or NICU to come put an IV in until we could get to surgery. Ryan could not be off fluids too long or he would start getting dehydrated. The pediatrician called the surgeon that had done Ryan's ostomy because we believed she was the one to do this surgery. She wasn't on until the afternoon. The pediatrician called the surgeon's partner (who had done Ryan's PDA ligation) and he wasn't wanting to do it (not wanting to step on anyone's toes we assumed) but had no choice. The pediatrician then called the neurosurgeon to make sure he contacted the surgeon and let him know where the Broviac could and could not be place. About 9 a.m. the nurses aide said transport would be coming to get Ryan at 9:45. Things were moving. We had them give Ryan an albuteral & pulmacort treatment for his lungs (it seems to help his lungs recover better after surgery). We took him down to pre-op. Ryan was in a really good mood - happy, smiling, talking, kicking. Normally when we go to pre-op he is a starving boy and pissed off so this was a nice change. We met with the surgeon and he said it should be a quick procedure about 20 minutes for his part (but up to 2 hours if he had any issues). We asked him if the neurosurgeon talked to him as there are restrictions as to where he can put it. He said he had not so Mom told him what the neurosurgeon had told her. He was ok with that. We met with the anesthesiologist and he wasn't going to use any narcotics for this surgery so they thought they should be able to pull the breathing tube out before Ryan came up. When we left Ryan Dad was concerned that the neurosurgeon had not spoken with the surgeon so we had the neurosurgeon paged. He immediately called in and said he had been paging the surgeon but no call was returned. We told him he was in surgery with Ryan now so the neurosurgeon called down to the OR. They came out and told us in the surgery waiting area that the two had talked and all was cleared up. Whew. We weren't sure if what Mom had told the surgeon was good enough and wanted to make sure all the neurosurgeon's restrictions were explained. We had left Ryan at 10:50, the surgeon started at about 11:50 and came to talk to us at 12:15. All went fine and they took Ryan to recovery to watch him for a little bit after pulling the breathing tube - wanted to make sure he didn't have any apnea episodes. Ryan got up to his room about 12:50 and was wide awake sucking on his binky. We got him all situated and he was doing really well. He fell asleep about 2 until 5. Then for about 3 hours he was a happy boy, talking, kicking, smiling. He was so cute - he would grab on to his mirror and push it down the crib. Very good boy! Dad had left with Grandpa and Mom had called him for something so she put the phone up to Ryan's ear and Dad talked to him. His face was so cute - as Dad talked to him Ryan's eyes got big, he got a smile on his face and was looking at the phone. Mom should have had the camera close! Oh well. The pediatrician started his Pedialyte back up at 5 ml per hour. We'll see how his ostomy output is tonight. When we left this evening he had only had about 40 out in 12 hours, which is good. Let's hope the next 12 hours he stays about that much.
February 19, 2008 - Ryan is 13 lbs! He has been a sleepy boy most of the day, which is ok by us since he is recovering from a procedure. He did play with Dad for an hour or so this morning, was awake for bath time and then Mom got him up about 4:30. He was up for about 2 hours and 30 minutes of that was him being a chatter box. He was happy, talking and kicking. Mom had taken some great video but on accident opened the camera battery door and it erased the video. UGH! Mom then sat with him in the rocking chair with his back to her chest and he was so happy. He was relaxed & looking around and after about 30 minutes he was asleep. Mom let him sleep like this for over 30 minutes and then put him back. We'll see if he is up all night or sleeps all night. His ostomy output has been high today. Instead of turning off the Pedialyte he was bumped down to 2 ml per hour. Hopefully his output will come back down quickly and we can resume working on getting him fed. The neurosurgeon came by this morning and isn't too concerned with Ryan's head at this point. The pocket is still soft and his fontanel is still sunken so we'll do a head ultrasound tomorrow to see how it looks. He massaged Ryan's head pretty good and the edema seemed less today. He just assumes there isn't much in Ryan's head right now. The infectious disease doctor stopped by this evening and Mom had not realized that the spinal fluid tested last Thursday came back with staph infection as well. UGH! Can Ryan not get a break? Mom looked at the report and it said rare staph. The pediatrician had mentioned that one of the cultures came back as a rare staph but we thought it was his blood culture not spinal fluid. Mom asked if the rare meant hard to treat. The infectious disease doc said no it means that it hardly grew the bacteria so it just means very small amount. It didn't grow out until the 18th so 4 days after the sample was taken. Luckily the antibiotics Ryan is on is the correct one for his head as well. Mom is concerned that now after every head surgery we're going to be hit with an infection. This is like #3 or 4 in his head since we've been in since December. There probably won't be a posting until Saturday. Mom has to go to San Jose tomorrow for training until Friday night and Dad will probably be too busy spending extra time with Ryan. Thanks to Grandma Pam and nurse Suzi for agreeing to go spend time with Ryan this week! It definitely makes Mom feel a little bit easier on leaving for a couple days knowing that they will be filling in for her. She is going to miss him terribly!
February 23, 2008 - Ryan has been doing wonderful and has been spoiled with lots of attention while Mom was away! Wednesday Dad was there most of the morning, Mom stopped by during lunch before she left for California and Grandma came by in the evening. Thursday Dad was there in the morning, nurse Suzi came late morning and then Grandma, Grandpa & Aunt Lindsey came in the evening. (We are very thankful for you all spending time with Ryan.) Ryan has been a very happy boy, kicking and talking. His nurse got him a new toy that you will see in the video that he kicks and it makes noise and spins and stuff. He loves it. Mom called Thursday and he had been playing with it for over 30 minutes and Dad said on Friday that Ryan did it for 1 1/2 hours. He didn't even want Dad to hold him he was too busy having fun. Last night the nurse and aide decided to take Ryan on a wagon ride and he loved it. They said they did it for like an hour. They said he cooed and smiled the whole time. Of course when Mom got back from California and came down to see him he was passed out. He had a busy day! But he was dressed in a cute onesie that said I Love Mommy (and the butt said Mommy Love Me) that nurse Suzi brought him and the nurse made Mom a card with some photos from his wagon ride. Oh so cute. Ryan did have a head ultrasound on Wednesday and the neurosurgeon said there is a little bit of fluid on the right side but the one area that got missed with the subgaleal shunt seemed smaller (but it could have been that a bad picture of it was taken) and the left side was pretty empty. He has been coming in and massaging Ryan's head as he wants to make sure that the scalp is not closing down around the tubing causing a blockage. Otherwise he is pleased and happy with where we are at. On the 19th Mom mentioned the spinal fluid came back positive for staph infection. While it did come back with 1 colony, which was the same type as the blood infection, no one believes it was truly his spinal fluid that was infected. Apparently when the neurosurgeon did the tap, he did get a little bit of blood in it so it is believed to be a cross contamination so we will be on the antibiotics for 3 weeks now just to be safe. This will put us at the ostomy take down surgery on March 6th. Then after that time and before the 20th (next shunt surgery) the neurosurgeon will tap the spinal fluid again and test it to make sure everything looks good. Ryan has still been dumping a bit in his ostomy bag so they stopped the Pedialyte continuous feeding they had been giving him (2ml per hour) but the numbers are coming down. Today he seemed so hungry so they let us give him some Pedialyte and he inhaled it. Hopefully Monday we will be trying some continuous feeds again. Today he was pretty cute but was awake most of the day so he was pretty tired when we did the wagon ride so we only did 2 laps. Many of you have asked how we are affording this. Luckily insurance has picked up basically all of it. And because he of his low birth weight and early gestation he qualifies for Medicaid - they consider him a disabled person with no resources - so they will pick up anything insurance doesn't. We have felt very blessed in regards to this because it is very spendy and so far we have not had to pay a dime. We have just had to stay on top of all the bills and make sure we are not being overcharged, which we have on 3 surgeries. Had Medicaid not been able to help, once Ryan hit his $1,000,000 lifetime maximum on Mom's insurance (which he will hit this month) we might have had some big issues. Ryan should qualify for Medicaid for 2 years, that is usually the amount of time kids like him need to catch up to where they should be developmentally so they not only will pay for medical bills but physical therapy, speech therapy, occupational therapy, home health nurse, etc. We will also be able to move him over to Dad's insurance (which does not have a lifetime maximum) without any pre-existing conditions. WHEW! We had many sleepless nights worrying about how to pay for this - would we have to sell the house, file for medical bankruptcy but luckily at this point, we won't have to. Not having that worry has allowed us to worry more about Ryan than the finances. And apparently there is a new law in Idaho that if Ryan goes off Medicaid and loses insurance (let's say Dad's insurance decides to have a lifetime max and says Ryan already hits it), if we have no other options, because Ryan was already a Medicaid recipient, Medicaid will then have to take him back under their plan and pay his medical until he is 21. We never knew much about Medicaid other than we thought it helped the poor but luckily there are some plans to help middle class folks like us not lose everything. We are definitely very very thankful for this help given the situation. Had Ryan not met the low birth weight and early gestation criteria and still had all these issues, we don't know what we would have done. We're just hoping the medical bills will start slowing down after we get him out this time. We are so ready to get our little guy home!
February 24, 2008 - Ryan had a good day. He slept in late but then had some great wakeful periods. He played with his new kicking toy for a good hour in the morning and had some tummy time in the afternoon. We walked him around the floor a few times and he enjoyed that. He also got to go 8 hours without oxygen today. He has been acting like he is hungry so we gave him 5 ml of flavored Pedialyte this morning and he inhaled it. When the doctor came in we talked to her about starting him on something because he is just so hungry. She said we could do 2 ml every hour if he wanted it. Oh he wanted it. By the time the hour was about up he was fussy and wanted some food. Dad is working days this week for training so Mom will meet with the doctor tomorrow to see if maybe we can add some formula to it or give him some more. He did great taking from the bottle - he was not pulling away like he was scared. He pulled away once or twice because he got too much in his mouth but otherwise he was like, 'I am so hungry give me some food'. Hopefully this will be a quiet week of working on his eating.
February 26, 2008 - Ryan turned 7 months old yesterday. The doctor was pleased with how well Ryan did with the flavored Pedialyte over the weekend so we were able to go up to 5 ml per hour by mouth yesterday when Ryan was awake and wanting to eat. He did well and inhaled it. His output was down over night so today the doctor decided that we could do 5 ml of 1/4 formula & 3/4 regular Pedialyte. Mom tried to give it to Ryan this morning and he flat out refused and threw a big fit. The doctor was out at the desk writing orders so Mom had her come back in. We wondered if it was a flavor thing so the doctor had Mom try the flavored Pedialyte and Ryan inhaled it - no problems with suck, swallow, breath. The doctor was pleased at how well he took it so we both thought it must be the flavor so she wrote to change to formula to another kind. This afternoon the physical therapist worked with him and she said he did well but she thinks he is getting too much in his mouth so he has problems doing the suck, swallow, breath routine. She also said we should do 10 ml every 2 hours instead of 5 every hour to give him time to rest as we build up. The nurse said at 4 o'clock he did ok as well. We tried at 6:30 and he threw a big fit like he had this morning. Once the formula hit the back of his throat he was pissed. So maybe it wasn't a flavor thing - maybe it is just the swallowing. Who knows but to add on top of it, the clasp on his ostomy bag came off so Ryan was also pissed that he had basically poop all over him. It also got all over Dad so he had to change into scrubs. We cleaned Ryan up and tried to get him settled down. Then his feeding tube was clogged so it had to be changed and he hates that. It just ended up not being a pleasant experience. We were able to get him to take the 10 ml by syringe. We squirted some into his mouth as he sucked on the binky. We're hopeful that this won't affect him trying to eat tomorrow. Mom is a bit worried but will talk with the doctor and the physical therapist in the morning. It looked so promising this morning that he was going to do so well. Hopefully it is just the change in texture he needs to get used to and get the suck, swallow, breath routine down. It is going to be a long battle again. This sucks. He loved to take a bottle before all of this happened. It is so hard being where we are at from where we had been. Please say a prayer for Ryan to get his swallow back so he can start taking bottles again (as well as pray for him to continue to absorb the food, which he has done a good job at). He'll have a head ultrasound tomorrow - hopefully things are still working there. The neurosurgeon thought Ryan's fontanel felt a little fuller this morning - we'll see tomorrow.
February 28, 2008 - Ryan has been doing well the last 2 days. Grandpa visited Ryan twice yesterday and held him both times until Ryan was asleep. Ryan had a head ultrasound yesterday and the radiologist report said no change. Mom met with the neurosurgeon this evening and he was happy with how things looked. While last week the cyst on the right looked smaller, this weeks ultrasound was a better shot and it is still there and it isn't smaller but it didn't seem like it was bigger. Ryan is doing really well absorbing his food. Today the pediatrician went to 1/2 strength formula and he gets 10 ml every 2 hours by mouth and from 7 p.m. to 7 a.m. he gets 7 ml per hour. Ryan is acting like he is having issues with swallowing and with the consistency of the formula. He did fine swallowing the Pedialyte but he pulls away with the formula - like he gets too much and doesn't know what to do. We're hoping more practice will get him past this. Yesterday the physical therapist thought we would try something new. She cut a hole in the end of his binky, put a feeding tube through the tip and then used a syringe to push formula into his mouth. He did great with it as long as you didn't give him too much at a time - then he would pull away. Physical therapy and Mom & Dad will try this technique over the next few days. Last night Ryan did well with it for Mom and today did much better. Even seemed like he wanted more than the 10 ml Mom was giving him. Hopefully as he gets more practice eating we can give him more at each push of the syringe and then next week we'll start working on the bottle. Everyone is really pleased with how he is doing. He is definitely a happy boy - only really getting fussy when he is hungry. He had a great time with his kicking toy again today. The nurse and nurses aide both told Mom how they love watching him play with it. In our own biased opinion he is very cute when he plays with it. We are a week out until ostomy take down surgery. We are counting the days until no more ostomy and we are also counting the times we have to replace his ostomy bag (only 2 more).