Caden was born on November 22, 2006 at 6:31 pm. He weighed 9lbs 11.8 oz and was 21 1/4 inches long. Big baby boy! He was diagnosed with Truncus on January 22nd, after what we thought was just a cold. He sounded like an old man coughing and wheezing. What was happening, essentially, was that his lungs were being over-loaded with (what we found out later to be) 6x the normal amount of blood. When we went to the doctor's office at Wesley, they checked his oxygen saturation, and he was sitting in the low 70s. We knew there was something wrong when the doctor just turned around and left the room with a worried look on her face. We were admitted and life-watched, after an echo, to Children's Mercy in Kansas City that night. What's odd is that he had gone to the pediatrician a few times before, and they had never found it. After they admitted us, the resident who was just "passing time" was the one that asked us... "Has he been diagnosed with a murmur?" I just said no, and shrugged it off. Surely they would have found it by now, right? I mean, there had been two whole months that they had ample opportunity to. We were in KC for five days and came home, only to wait for his first open heart surgery. I took a lot of video in the next three weeks, both to document his perfect chest, and as proof that we had him... if the worst happened. That may not make sense to some, but you do funny things when placed in a situation like that. I knew while I was filming that if it came down to it, I wouldn't be able to watch it, but at least we would have it.
His surgery was scheduled for February 27th, 2007. We handed him off shortly after 7:00am. It all went downhill from there.
Everything was fine after the surgery; all of our family was there. We finally got to go back to see him in the early afternoon. When we saw him for the first time, we just stared at him for a while. His nurse, Megan (who was awesome!) was buzzing around the room changing things, checking levels (literally with a level), and making notes. They left his chest open for a few days, due to the swelling. We didn't know what to expect. They had told us that if things went according to plan, that we would be going home within a couple of weeks. Hahahahaha... No, really.
March started out good. He was doing better and he was starting to breathe over the ventilator. They had lowered the vent peep (pressure) to a nice low level and they had lowered the oxygen to 21%, room air. Dr. Klem was the PICU doctor that round, (We love him!) and he decided to extubate (take out the breathing tube). His heart rate and breathing rate were slow enough that he felt it would work. Well, they extubated, and everything looked fine... for a few hours. The nurse we had that day was a NICU nurse, which is not a bad thing, but she didn't know where anything was, and she seemed a little air-headed. During the surgery, they had inserted an IV in his femoral artery (in his left groin). The nurse decided directly after extubation to remove that particular IV because it was not essential at that time. Turns out that he had created a blood clot around where the IV had been inserted. In order to break the clot up safely, we had to give him shots of lovenox twice a day for about 4 months. Because of the shots, and to make sure that the doses were correct, we had to take him every week to get blood work drawn to check the low molecular heparin level. Heparin and lovenox are blood thinners that they use to clear blood clots. Heparin is too strong for home use, so they use lovenox. We got the lovenox shipments every Friday, and they had to be refrigerated.
Anyway, after extubation, they decided that we could try to feed him a little bit by mouth. Up to that point, he had been getting TPN, an IV form of nutrition. This was his first try at food in over a week. He was still hooked up to all of the IVs in his neck and his hand, and his oxygen tube in his nose. He still had the chest tubes in for drainage, so it made it difficult and painful for him to move. We got him onto my lap, and I started to try and feed him. Paul was videotaping. Caden was doing okay, not that good really, but I thought it was great. Paul stopped taping... thank god. It was kind of dark in the room, and I was looking at Caden and I realized that he didn't look right to me. I told Paul to get the nurse, and she came in. She looked at him and ran out of the room. Within 30 seconds, there were about 20 people in the room and they were wheeling in the life cart. He had no breath sounds. He was code blue. They called it "acute code blue." They started bagging him, and giving him escalating doses of epinephrine through the IV. They re-intubated and sedated him. Paul and I had left the room, and were watching from the hall. We couldn't watch, so we left. We went outside and after a few minutes, we called. They told us to come back immediately. That's all they said. We walked in a daze, and while waiting for the elevator, I almost fainted. I felt myself losing my footing, and Paul caught me. When we got back to the PICU waiting room, the chaplain was waiting for us. What were we supposed to think? We had never had any contact with a chaplain before, and all he asked was "What have they told you?" We thought the worst. He took us to the little room inside the PICU. If you have been there, you know what I'm talking about, and the horrid feeling you have there. We called people and we cried. He was stabilized again. It took hours. During that pulmonary hypertension crisis, he ripped the patch between his ventricles back open. It was estimated that before the surgery, the hole was about 15mm long. He ripped it back open to 8mm. Over half way. They thought that he had developed sepsis, but apparently not. During that crisis, his body wanted to save his heart and lungs and brain, so it pulled from the other organs. His liver and kidneys began to shut down, and he developed jaundice. He was yellow. They said they had never seen it where the baby ripped the hole in the heart back open... He did. He's like wonder baby or something.
They moved us to a different room, one that wasn't so close to the nurse's station. In order to go home, or even to the 4th floor, he needed to get off of Milrinone, an IV drug that is used as anti-heart failure and blood pressure medicine. They had a really hard time getting him of that. Every time they turned it down, he would have a "mini" crisis. At one point, one of the cardiologists told us that they were either going to send us home and give him tons of drugs, or they were going to do another surgery. They were waiting to decide. They extubated him again. That didn't go so well either. They had to put him on bi-pap, which is like an oxygen mask that they strap to his head that forces his lungs to open fully. He was on that for a while. Gradually, they weaned him down. He would do 8 hours on, 2 hours off, then 6 hours on 2 hours off, then 4 and 4. He got a scar on his nose from the pressure of the mask. You can see the scab on the family pic I posted. It is a tiny scar, but it's there and I notice when I look at him.
They thought that they had stabilized him, and he was doing okay without the milrinone, so they decided to send us to the floor. A huge step and everyone's goal. We went up and we were there for about a week. Dr. Drake, the cardiologist, sent us home on a Friday... Another bad idea, going home on a Friday. He was taking something every hour. He was taking: Captopril, Metoclopramide, Lasix, Sodium Chloride, Potassium Chloride, Digoxin and Ranitidine... all at least twice a day, and several of them were three times a day. He was literally taking almost as much medicine as he was food. They taught us how to put in the feeding tube. It goes in the nose all the way down to his stomach, somewhere between his belly button and his ribs. I hated doing that. If someone stuck a tube up my nose and kept pushing till it got to my stomach, I'd be freakin!
Anyway, we went home Friday. Everything was fine till Saturday. He screamed nonstop for 48 hours. He was vomiting and having diarrhea the likes of which you have never seen. We put him on the dryer hoping the vibrations would calm him down. No. He would scream and scream till his face was puffy and bright red. His veins were popping out in his forehead. His eyes were bugging out. You could see his body working so hard. We were scared to death. What are you supposed to do? There was nothing you could do. Paul and I took turns going to the other end of the house so that we could get a nap. We didn't sleep at all because anywhere you were in the house, you could hear him screaming. You knew something was wrong. We called Dr. Drake on Saturday. He said it was the potassium chloride upsetting his stomach. OK, right. He knew how sick he was, and I don't know why he didn't tell us to come back in. To top that off, the pharmacy (Dandurand's) made his prescriptions wrong. Several of his medications were at multiple times the prescribed concentration... which can be lethal! Unfortunately, they are the only compounding (specialty) pharmacy that accepts our insurance in Wichita. (I have since found a wonderful pharmacy) A town of 500,000 people and only ONE compounding pharmacy?!?!?!?! Ugh.
Finally at around 2:00 Monday morning we decided to drive back the Kansas City. Paul took Bailey over to his mom's and I packed. There was nothing to pack, really, because we hadn't even had a chance to unpack. We didn't even have time to take a shower that weekend; you can imagine what I looked like after a few days... ewww! It was so nerve-racking. We got on the road and thankfully, the vibrations of the car put him into a restless sleep, but sleep nonetheless. We got to KC around 5:30 or so, and went straight to the Emergency Room. It sounds funny, but just being in the parking lot there made me feel better. I was so scared; I just wanted someone else to take him from me. We were luckily the only ones in the waiting room, so we got right in. The nurse took her sweet time getting his weight and all that. The whole time all I was thinking about was that he needed an IV and he needed to be started on milrinone. Finally they got him situated in one of the rooms, and started an IV, and not to my surprise, they started him on the milrinone and guess what??? He calmed down. He was exhausted. That drug let him rest a little. They moved us to the 4th floor. Why? I don't know. We were only there for a couple of hours before they moved us to the PICU. They determined that he was in severe congestive heart failure. Dr. Drake came in and I showed him the medicine that Dandurand's had given us. He just shook his head and said that he thought we might be back. What the???
His little butt was bleeding because all of the diarrhea... it was so sad. Like he needed all that on top of it. We got to the PICU, Room 13, and you can see in the picture that he was so much calmer. Dr. Kirsch (PICU doctor) was very concerned and later that day we had a discussion about his next surgery. She said that because the milrinone essentially stopped the heart failure, there was likely no other reason for his thrashing and screaming and other symptoms. The next surgery would be within days... April 2. Nothing big happened between the ER and the second surgery. He was so thin. The binky was huge on his face. He watched a lot of cartoons, because there was nothing else to do. We read books and stuff, but that was it. We got there really early on the 2nd. We sat in his darkened room waiting for the nurses to take us. He was sleeping and all I wanted to do was wake him up. To touch him and kiss him and tell him I loved him. He knew anyway. Us taking him back to the hospital was the greatest way we could have told him that we loved him.
They came to get him. We followed his crib to the surgery prep area. We waited forever. It wasn't long enough, but it was too long. "Just do it already" was all I could think. I wanted him to stay forever, but I wanted them to take him away at the same time. The sooner they took him, the sooner they would be done. They took him too soon, come to realize. For me anyway. We went to the cafeteria... we hadn't eaten yet. Couldn't really eat when we got there. You go through the motions.
We got to the surgery waiting room... for the second time. We didn't get the good couches that time. Oh well. We talked, drank coffee, played scrabble, and did crosswords. A lot of our family was there. It was good to have them there. We were waiting for the phone call. You know, that's the only surgery waiting room? So you are waiting in there with parents whose kids are getting their tonsils taken out. That just doesn't seem right to me. They are all talking about how horrible it is.
OK. Finally the receptionist called us. She was sooooo rude, and old. Just mean.... show some compassion, would you? Dr. O'Brien came in with Kasey. We asked questions, and he gave answers. Everything went well. He was having a little bit of rhythm problems, but everything was okay. He left the chest open again, and would hopefully close it within a few days. We celebrated, and moved up to the PICU waiting room. They have to get settled, you know, before we can see him. Finally got to see him. Looked pretty much the same as he did with the first surgery. But we were used to it this time, so it wasn't shocking. We went to an Italian place for dinner that night. We were staying with Matt and Emily. We went to bed early. Good thing turns out.
5:45 am, Paul's phone rings. He jumps up and grabs the phone. I'm groggy. Next thing I know, he's yelling at me that Caden's heart stopped and we need to get to the hospital. Its 20 minutes away. We knew he was gone. Just knew it. We were holding out hope, don't get me wrong, but I just had this peaceful feeling. Paul couldn't drive. It was raining and hailing and lightning. It was horrible. It was ironic. We called the family and told them to get there. It took us 45 minutes to get there. By the time we got there, there were people waiting for us. Janie, one of the chaplains was there and very helpful. Kasey came and got us and took us back to Room 13. We stood outside for a while with the other 2,000 people. Not really, but there were a ton of people watching. All nurses and doctors, so that made it better. We got in there, and he was already on ECMO. Dr. O'Brien wasn't there yet, so Dr. Lofland performed the make-shift surgery. They cut his neck on the right side to use his carotid and jugular arteries for the cannulas to pump the blood through his veins. He had dried blood everywhere. It was in his ear, all over his body, his face. He was lying in a pool of blood. His tongue was hanging out. It was horrible. He was sooo swollen from the surgery itself. We didn't want to stay in there too long. Too many people anyway. We stood outside his room. We went to the PICU waiting room and waited for everyone to show up. It seemed like forever. Dr. O'Brien came out with Kasey and the waiting room was still dark. It wasn't even 7:00 yet. Right at, actually. Anyway, we were sitting in the chairs by the lockers, against the wall. If you look in the glass window, you can see the door that the doctors use to go in and out of the PICU. We saw them coming, and heard the door. They came around the corner, not knowing that we were watching. They knelt down and talked to us. They had to move him to the NICU for the real ECMO machine. He explained what the acronym meant, and I remember asking him on a scale of 1 to 10, how serious it was. I knew it was bad, but that's the only thing I could think of. He didn't say anything. I said so, is it like a 9? He didn't really say anything to that either. OK, I thought. Kasey just rubbed my shoulder. They were so nice. They got up to leave and they turned around the corner again. In the window, I saw Dr. O'Brien pause before the door, look down, and shake his head. He then opened the door and went back to our son. I see that memory all the time. He didn't know that I saw that. He has kids. He's a good man. He does a good job, a noble job.
It took them forever to get him to the NICU. Our family got there and we had donuts. I didn't even put a bra on that day. I was so self conscious about it. Oh well. We all looked like crap. After a while, you try to give people the benefit of the doubt in a children's hospital. You never know what they went through last night. We got to see him hours later. I think it was even the afternoon. Fuzzy. Anyway, that ECMO room was the "treatment room" it was huge, and every corner had some type of equipment in it, and most of it was hooked up to Caden. They had to put him in a little bed. There wasn't room for his big crib. He was soooo swollen. His tongue was hanging out still, and it got worse. The nurses were really nice, but it just seemed like there was too much going on in there. I wasn't really comfortable there. You couldn't even stand close to him, cause there was so much stuff around him. He was sedated and paralyzed. He kept moving and they were worried that he was going to pull or move the cannulas, and "bleed out." He still had the dried blood in his ear. I couldn't clean it because a.) I couldn't get close enough, and b.) I might move the cannulas. He was on all types of IV drips. Tons. He was on the adult dose of morphine. He was on 6x the average dose for versed and fentanyl. Because of the paralytic, they had to monitor his brain waves. He could have been awake and paralyzed, so they needed to make sure he had enough of the sedatives. How scary for him. I can't imagine if he had woken up. Around day two or so, we were going to get something to eat. We were driving in the car when we got a call saying that they needed to do an exploitative surgery and we needed to be there. We immediately turned around, and got back to the waiting room. He was bleeding too much, so they wanted to check it out. The sucked out a liter of blood from his chest cavity. He was oozing blood from the cannula site in his neck. They tightened the strings, and things were better. They had to do that three times while he was on ECMO. So, technically, at this point, he had had five surgeries. Technically. They did have to open him up each time, so I guess it counts. His chest was open the whole time he was on ECMO. Not open, but you could see the dip in the bandage where his sternum was supposed to be. Around day 6, Melissa, the social worker pulled us aside. We went into a room inside the NICU and talked for a few minutes. She informed us (among other things) that if he didn't get better within a few days they would start thinking about "the talk". You know, whether or not to continue. It didn't get to that. Thankfully. Caden came off of ECMO on April 11. It took several failed attempts and several days, but they got him off of it. We had this cart full of animals and toys and books that were Caden's. One of the NICU nurses made Caden a poster with his name on it while he was on ECMO. It's hanging above his dresser now. Its jungle themed and it goes with his room.
We moved back to the PICU, Room 7. We were getting everything settled, it took a while. We had the deluxe Scrabble edition that my dad had given us, and we played that game constantly! There was one time, weeks after ECMO that the doctors and surgeons were doing evening rounds and I had Caden on my lap playing scrabble. He was just staring at the game. The doctors thought that that was just the funniest thing. They thought he had brain damage, but he sure was paying attention to that!
After he came off of ECMO, progress was slow, but steady... to a certain degree. There were setbacks, but for the most part things were looking better. While on ECMO, he had bloated up severely, and they had been putting this vaseline stuff in his eyes and on his lips to keep them moist. It was kind of gross. The afternoon that they moved him back to the PICU, he was still in the tiny bed. The bed for tiny babies. It had a temperature guage that they stuck to his stomach and a heat lamp above the bed to keep him a constant temperature. He was still on all of the drugs to keep him asleep, but they had stopped the paralytics. He was knocked out. Dr. Klem was the doctor that day also. I stared at Caden and stood next to his bed forever. While on ECMO, you couldn't even stand near him because of all the equipment, so back in the PICU, it was just nice to be able to stand there. Within a foot of him. He was sooooo puffy. His skin was like leather on a drum, if that makes sense. Like on a real bongo, how they use pelts and stretch it across. It looked kind of waxy. Like if you touched it, it would split. His eyelashes were pasted to his face because of the vaseline stuff. His chest was still open. They were worried about it being open that long, but he was too swollen to close it. They probably couldn't have closed it if they tried. It was open for almost two weeks. That's a lot of opportunity for infection. It's very scary that he could have had sepsis from that on top of everything else. We would sit there for hours reading or playing games. I remember one afternoon, either the day he moved back to the PICU or the next day, I stood at his crib staring at him forever. Dr. Klem had told us that we should be seeing him starting to move soon. He started twitching, and I was so excited. Those first couple of days after ECMO were hard because we didn't know if or to what extent he had brain damage. We didn't know what the paralytics had done to him either. We didn't know if they had cause any permanent paralysis. His toe twitched and we stood there staring at it. We were standing there staring at his right big toe. Waiting for it to twitch again. His finger moved too. That was exciting. We could see his eyeballs moving, so that was good. A few days after ECMO, they were trying to get him off of the morphine and other drugs. He started going into severe withdrawl. They started him on Methadone and Ativan. My little druggie. The doses weren't high enough, and they didn't want to give him too much, so they were increasing it very slowly. It took them days before they got it high enough. Thursday after coming off ECMO was one of the worst days there. He was fully awake by then, and pissed off about it. Because of the withdrawal, his arms and legs were moving involuntarily. He couldn't stop moving. He was kicking the blanket non-stop. The blanket started getting lint balls all over where his feet were, from his feet rubbing it so much. They gave us that blanket, and I wonder if it's because he rubbed it thin. It's a cute Curious George blanket that someone donated. It's under his bed now.
He was sooo thin those days. Usually they put the pulse/O2 saturation monitor on the toe. It's like a band aid thing that they wrap around the big toe. He was kicking so much that it wouldn't pick up. The monitor was constantly dinging saying that he wasn't getting any oxygen. That's nerve racking! They got a huge head-wrap thing and put it around his head to get a better reading. It's for bigger kids, so it didn't work very well, but at least it was somewhat accurate, and it wasn't dinging at us all day. It's sad when you get to learn what every ding means.
We took some video. I think, of that day he was having withdrawal so badly. We were just so happy that he was awake. One day at a time... literally. Meadow and Ryan (my sister and brother-in-law) came to see us that Friday. It was right before Ryan's birthday. They still hadn't figured out Caden's Methadone and Ativan doses yet, so by the time they got there, we had swaddled him to try and keep him from moving so much. He had finally fallen asleep... kind of. He couldn't even sleep well because of his involuntary movements. He had dark circles under his eyes. I have some pictures, I'll put them on. It was so wonderful to see him sleeping. It was even better when they figured out the correct doses. He was spasming anymore. Our friends Lene' and JR came up to see us that week too. He was more under control when they came up. He was intubated still, and so he didn't make any noise when he cried. He was almost to the point where they had gotten the withdrawal under control. He was still kicking a lot and "screaming." He had his staples in, so they had already closed his chest. He was very thin and generally pissed off.
Lene' and I were pregnant together. We worked together and our babies were born exactly one week apart. We got to be pretty close when we were pregnant. We are still very close now. It was difficult to sit there with her daughter. She was standing up and playing and eating and "talking" and wanting things. I looked at my baby and that was one of the first times in the whole ordeal that I let myself think about how bad things were. He couldn't even roll over if he wanted to. He couldn't because of the chest tubes and because of the ventilator or because of the IVs, but even if he had been able to physically, he wouldn't have been strong enough. She didn't have any scars. I'm not trying to be mean or hurt anyone's feelings; it's just something I thought about.
When they extubated him (It was the Friday that Meadow and Ryan came) he did great. It's so scary to watch them take it out. They don't care if you watch, but I never did like watching. They sit him up almost completely, and they take the tape off his face, and they pull it out. Simple as that. They have to do it in sync with his breathing, but they just pull it out. It's amazing how far those tubes go down their throat. They are gross looking too. His little vocal chords were paralyzed. He would scream and... Nothing. It was nerve racking, because you could sit there, reading a book or playing a game and he'd be crying and you wouldn't even know it... except for the dinging. After a while, about a week, you could hear a scratching noise when he cried. I was afraid to leave him alone in case he started crying. The nurse wouldn't hear him. It was probably a good month before you could hear him at all. They stuck a probe down his throat to look at the vocal chords, and they said he paralyzed the right side, which is opposite of the norm. Of course it is! He even had to paralyze the wrong side. :)
The first few hours after extubation are always scary. He had a horrible track record with extubation, but that time he did great! Progress from then on was slow, but steady. We moved up to the 4th floor at the end of April. In the PICU, the most patients one nurse has is two. When the child is critical, then they only have one. Caden had one nurse for a while. On the 4th floor, they have up to 5 patients. It's kind of scary. If something happens, and they are in with someone else, what do they do? Sometimes it seemed like the nurses wouldn't check on him for hours. When they moved him upstairs, he as on continuous feedings. He was getting about an ounce an hour aroung the clock. It was high calorie formula. He still only weighed about 3-4 pounds more than he did at birth, and he was almost 7 months old. Anyway, they started giving him bolous (bulk) feedings. He would get 3 ounces over one hour, every 3 hours. That worked ok, until he started throwing all of it up. I was very worried about that, because the whole reason he was on the feeding tube was because of his vocal chords. They weren't closing because the tube had kept them open for so long. If he got fluid down his throat, who knows if he would know how to swallow it, or if it would just go straight into his lungs? If he aspirated, he could have been right back in the PICU. His lungs were still very fragile. His right upper lobe had a lot of collapse, and they were worried about that forever. They always were and they still are to this day. The collapse happens quite commonly in babies that are intubated for long periods of time. There are three lobes in one lung and only two in the other. I don't remember which is which, or why it's like that. The breathing tube sits closer to one lobe than the other, and somehow causes it to collapse. They were giving him breathing treatments, and they decided that it would open back up on it's own, or he would grow out of it. He still has part of his lung collapsed. They always talk about it and discuss whenever he gets chest xrays in Wichita. I'm not really worried about it anymore, but the doctors here freak out about it. They worry that it may be new collapse. I always tell them that he's had it for a while, but they still freak.
Anyway, when he started vomiting, I got concerned. If the nurse was with one of her other patients, how long would he be laying there with it all over him, and if he was on his back (he still couldn't roll over) it would go straight down his throat. It was soooo scary to leave his side. Scarier almost than when he was on ECMO. At least in my head that made sense. On ECMO, he had 2 nurses to himself at all times. There was always someone in the room with him. On the 4th floor, he was sharing a nurse with 4 other kids and he didn't have a voice. If he was choking, he wouldn't have made noise anyway, but still... scary. In the medical history we got printed off from the hospital, there are a ton of notes in there from the 4th floor from therapists and the nurses. Many of them say how he doesn't want to play with anything, or how he wouldn't track objects with his eyes, or he had no desire for oral stimulation, no desire to suck the binky, no head control, no stomach muscles, blah blah blah. Duh! He was laying in bed for more than half his life. His head was sooooo flat since he had been lying flat for so long. I have a picture of it somewhere. Some people made comments on how funny his head looked. Thanks... I realized that, no need to rub it in. It's round now. We had to make sure he never laid flat for very long, so that it would round back out. I kept fighting the nurses, cause they wouldn't roll him. How hard is that? He probably didn't like staying in the same position anyway. We joked about how when he grew older he'd have to ask the hair dresser to make it a little poofy in the back. It looked fine to me, and if that was the only residual problem he had, that would be okay.
We went home on May 7th. He was still on the feeding tube for a couple of months. They gave us this really cute little feeding pump, and tons of supplies. Our living room turned into a hospital. At least it felt like it. But, it was still home. I hated putting the feeding tube in on my own. I still wasn't working because I didn't know how comfortable other people were with inserting the tube if needed. If he vomited (which he was still doing a lot of) then the tube came out of his mouth. So, right after he vomited, you had to rip the tape off of his face and pull it out of his nose. As if he wasn't feeling yucky enough.
Rainbow's started coming that week or the next. Sarah is his therapist, and she still comes. She is great, and she always has new things to teach us, and new ideas to get Caden to do more stuff. Of course, that is her job. I have the carbon copies of all of her notes when she comes to see him. Our first goals were to get him to eat by mouth, roll over and sit up on his own. Looking back, and seeing how far he has come, it seems like those are such small goals to have. Really, though, those were huge, and when he started doing those things, we were so proud. He's such a sweetie!
I kept him in the bassinet next to our bed at night. He was like a newborn. I wasn't comfortable leaving him on the other side of the house. He was also still getting Ativan and Methadone every few hours, so that would have been a hassle crossing the house in the middle of the night. He was on a slow wean from those meds, and it was a few weeks till he was off of all of them. It was pretty nice in the middle of the night, giving him the meds through the tube, because at least we didn't have to wake him up. He couldn't taste how horrible they were either. He was gaining weight and filling out.
On June 13th, we went back to KC for a swallow study. He passed on the thick liquids, so we could start giving him food by mouth. Yay! He couldn't have any cereal or baby food, but at least he could have a bottle. We cut the nipples so that he could actually get the food out, and he really wasn't interested at first. It was thickened to a syrup-nectar consistency. He hadn't had any oral stimulation in a long time. Months. He didn't even want the bink. Paul's mom went with me to KC when he had the swallow study, and we were both struck by how cute he was sitting in that chair, strapped in, trying to suck the bottle. It was the cutest thing ever. His little cheeks were just a-goin'. Sooo stinkin' cute!
He started sitting up, and rolling around. He started crawling somewhere around October... Maybe, I can't remember. For a very long time, he wouldn't stand on his feet. He didn't even like you to touch the bottom of his feet, so getting him to stand was another endeavor. Well, if you think about it, he had no pressure on the bottom of his feet for about 6 months, so his nerves were probably sensitive. He is doing much better with that now. He is almost 16 months, and still not walking, but from where he was a few months ago, he's doing great. He will walk (if he's in the mood) with you holding one hand. He won't stand up on his own yet, but he walks around the furniture. We got a leather ottoman, partly because he won't hurt himself if he falls, but mostly because we liked it so much. :) Sarah did tell us though, that while kids are learning to walk, you can get those fun noodle things for the pool, and notch them out to stick around the coffee table. Good idea, worth sharing, I thought.
He got off of the feeding tube completely in July, or so. He was on thickened liquids through November, when he had another swallow study. He did great at that one, and they tried it without thickener. He did good, but I was still nervous, I just weaned him off the thickener slower than they told me to. Sometimes they try to go too fast. I think we learned our lesson on that one the first time.
He had an MRI on July 2nd. Even though they do daily ultrasounds of the head on ECMO, they still wanted to check and make sure that he had not sustained brain damage during his hour-long cardiac arrest. The never did send us the results, or call us for that matter. I requested a copy of it, and there was nothing major found. In other words, he's fine. :)
He has, quite literally, been sick constantly since we brought him home from the hospital in May. He always has some cough or a fever, or a broken bone...
So it was the beginning of September. He had a temp and a cold, so I was going through his clothes to find him something comfy to wear. He was on the middle of the King sized bed, and he hadn’t been rolling for very long. I opened the closet and was looking at the boxes. I heard a thump. A big thump. He had rolled from the middle of the bed, all the way and fell off. He was screaming, which is understandable. That was late afternoon, and I thought he just bruised it or that his little ego was hurt... We were waiting for him to calm down, but that never happened. We got the earliest appointment we could, and took him in to see the pediatrician. They took x-rays, and saw that he had broken his femur. The biggest bone in your body... and he had to break it. It almost looked like a spiral fracture to Dr. Palacio, so he had to get a second opinion, and if that were the case, they were going to call social services. Great. After all Caden had been through, they were going to investigate us for child abuse? Well, it turned out that it wasn't, but the thought of it was unbelievable. He sent us to a bone doctor on the other side of town, and he got a splint. He was supposed to have it on for 2 weeks.
Well, the cough that I was talking about... the one that I was looking for clothes when he fell of the bed? It still hadn't gone away, so we went back to the pediatrician. We went on Friday, and he gave us meds. He told us to come back on Monday, and we'd see how things were going. Not good. They called Wesley and told them that were coming to admit. Great.
He was in Welsey for less than a week, but they are so under-staffed that I was afraid to leave him alone in there. So, he was in the hospital for "pneumonia" and he had a broken leg. I was there one day, and Paul's mom came for lunch. His little toes looked like they were swollen, and the bone nurse had told us not to take it off unless we really needed to. I unwrapped it most of the way to let his skin breathe, and I saw the pressure ulcer. It had only been 5 days since he had gotten the splint, and he had a pressure ulcer on the top of his foot by the ankle. It was about the size of a quarter. I called the nurse, and we put some ointment on it and wrapped it back up... looser this time. Well, we got discharged, after another medicine (a Diuretic) to the daily routine. Anyway, we were sent home, thankfully not to KC. A few days later, I was letting his skin breathe, and I looked at the back of his knee. He had another, larger pressure ulcer on the back of his knee. It was black. Not brown or red, but black. The edges were red, but that was it. We called the bone doctor, and we were able to get in that afternoon. Paul told the nurse what it looked like and she said "What do you want us to do?" What? You tell me!
We went in, and when the nurse saw it, she was surprised, and I thought... "Did you think we were lying or something?" Our doctor wasn't there, so a different doctor looked at an x-ray that they took and he decided that we could just leave it off since it had been on for 3/4 of the time that they had prescribed. Only a week and a half and it was healed enough. That doesn't seem fast enough, but kids are resilient. He has scars from both of them now. His left leg is a little funny looking when he walks because the scar tightened his skin on the back of the knee. So it looks funny when he walks... at least he's trying to walk! When I say that he has scars everywhere, I mean it. We have been trying to include more protein in his diet to keep his skin from breaking down. We played catch-up with his immunizations for months. He wasn't allowed to get them while he was in the hospital. Well, when he was so sick, it would have been horrible timing, so we just waited. We went to the pediatrician so often they asked us if we just wanted to be billed for the co-pays. :) No, I'd rather pay $20 now (and often) than $180 in one sum later. He's caught up now.
I'm sure that I will come back and add more things later, but I'm tired of writing. Sorry it's so long... talk to Caden about that. :)
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