Round Two. I never imagined this would ever happen. It’s hard enough to live a nightmare, to have your worst dreams come true. It’s even more terrible to relive your nightmare. In some ways, going through a terrible experience for the second time lowers your anxiety because you know what to expect. On the other hand, sometimes it elevates your anxiety, because you know what to expect. I don’t know that I’ve ever had the feeling I felt on Sunday… Sick. So sick thinking about what my son was about to go through again. I was willing to do anything to prevent it. I wanted it to be a dream, so badly. I prayed that it wasn’t happening, but knew that my prayers couldn’t change the present, but could only comfort me in the moment and in the future. And I don’t know that I can put into words the feeling of not only reliving the most awful experience of your life, but knowing it was worse this time. I knew there would probably be nothing worse. Interesting feeling… hitting rock bottom. Knowing that very few people have felt the way you felt and experienced what you experienced. Not many people could understand how we were feeling, nor would they like to even imagine.
It’s difficult. I really want to put my feelings on paper and document what happened, but the pain I feel thinking about what happened is intense. I can’t get it out of my mind. It replays day and night, over and over. It takes my breath away in the replays nearly as much as it did in real life. No one should ever have to experience that level of fear. It’s unfair. It’s inhumane. It’s life-changing.
Sunday, March 11, 2012- Monday, March 12, 2012
Jayson became very congested again Sunday morning. He had massive amounts of mucous in his nose and mouth, and was having a difficult time breathing, sleeping, and eating. Oh no. We already did this. There’s no way. All of these were thoughts I had that morning. We went to church to teach a lesson, and I kept him covered. In my heart, I knew this was bad. I knew this was coming. We visited Insta Care that evening. Sure enough, bad news. Jayson had another virus, possibly the same virus, again. The doctor was hopeful we could keep him out of the hospital if we had daily doctor visits and came to the hospital several times a day for suctioning. We were determined we could stay on top of it this time; this illness would not consume our son under our watch! We went home and I got Jayson ready for bed and connected to his oxygen. We increased his levels for the night, just to be on the safe side. A strong feeling came over me and told me things were about to get bad. I felt a strong feeling of comfort and I knew that we would end up in the hospital again sometime that week. We got into bed. Jayson was progressively getting worse and his congestion was interfering with his breathing much more than before. Mike was asleep and I lay awake watching my son take every forced breath. He began gasping for air, which was common with his RSV. It got worse. I got out my phone and began timing it. Twenty seconds. Thirty seconds. Gasping for air for thirty-five seconds. This was bad. I woke Mike up and made him sit with me and watch every breath. Every couple of minutes, Jayson would gasp for twenty to thirty seconds. We decided it was time to go back to the hospital. Just as we began to get out of bed, Jayson’s body went completely limp and relaxed. His eyes were completely closed and he was not passing any air. No gasps. No breaths. Nothing. I screamed, “Michael!!!!!” I shook his little arm. Mike shook his legs. I harshly patted his back. I turned him over. I flipped him from side to side. I slapped his cheeks while tears were streaming down mine. I was screaming, “Jayson! Jayson!” Nothing. No response. I yelled, “Michael! Call 911!” Seconds were flying by with no signs of movement. I got an operator on the phone and I could hardly speak. I just yelled. Help! I just wanted help! I focused on the phone call for a moment while Michael continued to try to get the baby to breathe. It was so hard to remember my address. How do I spell Valerian Circle? How the hell should I know! My child is dying! They told me to get him on the ground and clear his airways. Minutes had gone by. I was preparing for CPR. Why couldn’t I remember the youtube video I watched about CPR? I listened for any air movement. Nothing. Just as I prepped to begin pushing on my little boy’s chest, he took a couple of shallow breaths. My heart leapt in my chest as I thought he might be okay. He stopped breathing again. I moved him side to side. Slapped his little cheeks, tilted his head back again to prepare CPR and he began to whine. Finally I heard the most beautiful sound I had ever heard in my life—his soft cry. My baby cried. And so did I. So hard. Tears of sadness, fear, gratitude and celebration. My son was breathing! The operator on the phone stayed with me until paramedics arrived. They were fast, five minutes maybe. But somehow five minutes felt like forever. They assessed my little guy as he sat there crying and crying. I just watched him kicking and clenching his fists thinking he was my little miracle. The paramedic team assessed him and put him on their oxygen. My little man once again got loaded into the ambulance, but this time in the fire engine.
Primary Children’s
We arrived at Primary Children’s and it all seemed like déjà vu. Arriving by fire truck was not less frightening than by helicopter. Jayson got assessed in the emergency room, and we got buckets of bad news. RSV positive. Again. CO2 levels in his blood were high (62- normal is less than 48). He needed an IV. He was staying for a while. He was going to PICU. After several blood draws and blood curdling screams from my little one, my stomach had enough. I spent the rest of the early morning heaving in the bathroom, hoping I could throw up the terrible memories of shaking my lifeless baby from side to side. No matter how I tried, some memories are impossible to purge.
When the dizziness subsided enough that I could pick myself up off of the bathroom floor, I reentered the Emergency room to see they were prepping my baby for an iv. Last time, it took three or four sticks to get the iv in, and they wouldn’t let me near him to comfort him. However, I felt my presence gave them a sense of urgency to get it right the first time. I didn’t want to leave my son to get an iv without me for that reason, but I knew if I didn’t leave this time, I would end up in a bed next to him after passing out. I waited in the waiting room and a nurse brought me some crackers and apple juice to calm my stomach.
I was soon told that the iv was in and my son was receiving fluids. I entered the room again to find him on high flow oxygen and on an iv. The nurse said he needed to be pricked again to have his blood gases checked now that he was on the high flow. His gases came back lower at 52, so we were ready to get to the PICU. The good thing about going through this a second time was that I knew what to expect. The bad thing was also that I knew what to expect. I hated the PICU. Screaming children in pain and beeping monitors would be enough to make me ill all over again. Fortunately, there were not many admits in the PICU that day. It was much quieter. I knew this was more or less a waiting game. Jayson was really sick, but there wasn’t anything he really needed from PICU, just the high flow. After they could wean the high flow from 7 liters to 4, I knew we would be back on the floor. We were asked to leave the PICU from 7:00-8:00 AM while they had their shift change, and Mike and I ate some breakfast. Shortly after, Mike left to go back home to get me a suitcase of clothes and things, and to take care of Maya.
There is not any privacy in the PICU. It reminds me of many ER’s with just curtains separating patients. I sat down in the rocking recliner and I picked up my son’s fragile little body and cradled it in my arms. I had suddenly come to the quick realization that I had not slept in over 54 hours. I reclined my chair back until it hit the curtain behind me, and cuddling my sickly sleeping baby in my arms, I started drifting off to sleep. Just before closing my eyes, I noticed the family on the other side of the curtain was doing the exact same thing. I overheard their conversation--- baby with RSV, life flighted from Vernal, so dehydrated they couldn’t get an iv in, and had to somehow put it in the baby’s shin bone. Sad. But I felt comforted seeing them rocking their little one in their arms just the way I was rocking mine.
I woke up in a daze. I had a difficult time deciphering whether I was awake or still asleep. I heard many loud noises and heard a calm voice over the intercom system announcing a Code Blue in PICU. Right next door. I looked over my shoulder to the rocker chair near mine to find it empty and the parents standing near the back wall, holding each other and crying. People came running, in all directions. The doctors whose voices comforted me were now yelling for machines and medicines. Lights were no longer dimmed and chaos filled the PICU. Machines were wheeled in with a hurry. Random medicines with long names were injected into this little baby. I looked around, and other families of patients looked just as I did. We all held our little ones tighter for those few moments. I couldn’t hold back the tears. My sobs were not enough to wake my sleeping babe, and I said a prayer out loud. I remembered something that a nurse told me the last time I was in PICU—angels walk these halls. I asked Jayson, “Where are the angels Jayson? We need the angels. Call the angels little Jayson.” My little one woke up and stared up at the ceiling with such focus. I knew the angels were present. Voices started getting softer and calmer next door, and my grip on my own son began to loosen. Machines began to wheel away, and the parents approached their son. Just then, the monitors went off again and the little one flat lined again. Everyone was called back and I rocked Jayson back and forth and said another loud prayer. Unfortunately, this happened another two times before we were able to leave the PICU. Mike finally arrived back at the hospital, concerned about all of the chaos so near to our bed. I informed him of what was happening when the Primary Children’s Family Relations Coordinator again paid us a visit. She informed the nursing staff we were “red-flagged” and insisted we were removed from this traumatic environment right away. Suddenly a room became available upstairs and we were quickly rolled away. I peeked over the curtain to ask the boy’s name. I told the parents there would be many prayers said on Braxton’s behalf. My heart hurt for them.
Things were pretty calm in our hospital room. We again had the half of the room with the window and the bathroom. Everything seemed the same. But this wall I would be staring at for days was lavender, instead of pink. Things were pretty much the same as before. Frequent nurse visits, frequent suctioning, weans on his oxygen a couple of times a day. Mike and I just placed in our Boy Meets World videos, and made ourselves comfortable. The doctor team came by and didn’t tell us anything we didn’t know. They said they would be sure to wean Jayson carefully, because they had read about what happened before. They also said they would have full control over the weans, and respiratory therapy would not be able to wean his oxygen. We thought this visit might be different. Maybe I wouldn’t have to fight to keep my son safe, comfortable and alive this time. Maybe.
Tuesday, March 13, 2012
Tuesday Mike went to work and we spent the day slowly weaning Jayson’s oxygen. I refused to have it weaned overnight when I would be unable to keep a close watch on him. He needed semi-frequent suctioning, but did not show many signs of struggling for breath. He seemed comfortable, which made me feel comfortable.
Wednesday, March 14, 2012
Wednesday the doctor team came for a visit in the early morning. This was a new doctor team than before, and I hoped I would like them just as much. Jayson’s oxygen was weaned to 3.5 liters on high flow. The attending doctor wanted to switch him to a smaller cannula, but leave him at 3.5 liters. I didn’t know that was an option! Typically high flow oxygen requires a larger cannula. I gave her my consent wondering how a smaller cannula might work with the high flow. Suddenly, the respiratory therapy team came in disconnected him from the high flow equipment and told me they were “getting it out of the way so we had more room” and slid it aside. Lies. I said, “But wait! He still needs the high flow. The doctor said we were just switching to a smaller cannula.” The therapist said, “You can’t use a smaller cannula with the high flow oxygen.” The doctor team knew I would oppose a quick wean from high flow to regular oxygen based on what happened before. So they told me they were just going to use a smaller cannula. Again, they weaned him incredibly fast and against their protocol. He should go in half steps from 3.5 to 2.0 before switching to regular oxgen. I hated the doctors. I hated them for risking my son’s health. I hated them for bringing back these feelings I had before. I hated them for betraying my trust. I was done. Done with doctors. Done with trusting. Done with sleeping. Done with leaving my son’s side, once again.
I just sat in anger throughout the rest of the day. Jayson started doing his gasps periodically, struggling to breathe. When I had a chance to sit and think calmly, I came up with some concerns. On high flow, the docs can adjust the oxygen. Jayson only needed 24% oxygen. Now he was getting 100% oxygen. Is that harmful? I also remembered that at Riverton when he was getting high levels of oxygen and struggling to breathe, he retained a lot of CO2 in his system. I wanted his blood gases tested again. I did some research online and my concerns were backed by research studies. I asked to talk with the night doctor. He made me feel stupid. He dismissed my questions and research so easily. “Only premature babies are at risk of oxygen poisoning. A couple of days on 3 liters 100% won’t hurt him. No, there is no evidence that his body is holding in CO2.” I again felt sick to my stomach and wished my concerns would be heard. A kind nurse who heard my concerns turned Jayson’s oxygen to just wall air which is 21% oxygen at 3 liters. I woke up a lot of that night as I heard my baby gasp for air. He was not getting better.
Mike had to leave after tonight to go to Zion's National Park. He only needed two credits to graduate and instead of taking an academic class, he decided to take a hiking class to Zions. Unfortunately, it landed right in the middle of Jayson's hospital stay. I was going to have to get through this alone.
Thursday, March 15, 2012
Thursday was Jayson’s three month birthday! He spent his two month birthday in the hospital, and again his three month birthday!
I talked with the team on Thursday morning about my concerns I asked the night doctor. I then told them that Jayson was gasping for air again, just like he did the night he stopped breathing. The doctor team told me I should be assured by the fact that his oxygen saturation levels only dipped once that night. Even though he would stop breathing for short periods, he was retaining oxygen. That didn’t make me feel better. I reminded them that my son did these gasps for air right before he stopped breathing completely. The doctor informed me that ALL babies stop breathing, and that the important thing was that Jayson started breathing again on his own. That should bring me comfort. It didn’t.
Luckily, I spent the day with one of my favorite nurses. She weaned Jayson’s oxygen throughout the day. He was doing really well statistically, but anytime he took a nap, he would gasp for air. He was doing it less periodically, and more consistently. Any nurse or technician was able to walk in any time he was sleeping and see him do it. They said he was definitely obstructing, and it was concerning. The doctors popped in at some point and even saw him obstructing. They called the Ear Nose and Throat doctors, and convinced them to come by, even though they typically don’t come by to examine RSV patients. Miraculously, they came by and agreed to do a scope. The ENT doctors had no interest in listening to me and what I had observed. They did their scope quickly, which was very difficult to watch. Jayson was so upset, and I’m certain he was in pain. ENT said they didn’t see anything obvious. They said he was swollen much like a RSV patient would be, and that his cheek bones were more concave which puts pressure on his nasal passages. They said his vocal chords were especially swollen. They said he would probably need to be scoped again once he recovered from RSV, and they were on their way. Sigh. Still no answers.
I did not sleep much that night. I held my baby while he frequently struggled for breaths as he slept. He would gasp for up to 45 seconds at a time, and his oxygen levels would only go down to 94%. One concerned nurse listened with her stethoscope to hear if any air was passing through. None. Nothing. I took a video to show the doctors in the morning. They needed to be reminded that Jayson was not in the hospital for RSV, but because he stopped breathing.
Here is the video I took of Jayson. During part of this video, you can see his forced, noisy breathing. You can hear and see the obstruction. During other parts of this video, you will see him trying to move air and there isn't any air passing through for quite a few seconds. His body is moving up and down on its own trying to move air, and his head is tilted back because it's supposed to help open his airway.Friday, March 16, 2012
Friday morning I showed the doctor team my video. They claimed it helped them to see what he was doing. They had seen him obstruct, but he was still passing air. I informed them of what the nurse had observed, that there was not any air passing through he was completely obstructing. The team again reminded me that his saturation levels were good, and that alone should comfort me. They felt he should be ready to go home soon. I told them I would never sleep! They told me they would consider sending me home with a monitor, even though it would go off like crazy. I said that might give me a little peace of mind, but my son would still stop breathing for up to 45 seconds and the monitor wouldn’t go off. How long would he have to stop breathing before it would alarm me??? They informed me that his oxygen levels should drop low enough to alarm me after 20 seconds. It didn’t. They told me that Jayson would be monitored on .5 liters of oxygen for the next 24 hours, and if he was doing well, he would go home the following day on .5 liters of oxygen. They said they would give the Pulmonary Specialist a call and see if he had any recommendations; but again, he doesn’t like dealing with RSV patients. I was informed later that the Pulmonary Specialist would like his CO2 levels tested again through a blood gas test, and that he would like to have a swallow test done to rule some other things out. Finally. I had wanted his blood gases tested for days, and no one would listen.
I got Jayson to sleep a little after midnight, which was a difficult task. He was so uncomfortable trying to breathe at this point that he wouldn’t sleep. I stayed up rocking him until 2:30 in the morning. They were able to come in at that point and draw his blood and I went to sleep… for a couple of hours.
Saturday, March 17, 2012
I woke up early Saturday morning, eager to learn of the test results. I saw the resident doctor, who told me his gases were high at 56. I thought two things: Thank goodness, they’ll put him back on high flow. Crap, we may go back to PICU. I was wrong on both accounts. I asked him what he thought we should do. He said, “Nothing, really. They’re high, but not too high. They were higher when he was admitted. They’ll probably lower over time, once you guys get home this afternoon.” I asked, “What about the other test the Pulmonary Specialist wants done?” He said, “I don’t think it’s too important. It’s more to rule something out. If you really want to, you can do it as outpatient.” If looks could kill, he would have been dead. I said, “You do a test to see if his blood gases are high, and they’re high. And you want to send us home? My son is struggling with every breath and you want to send us home?” He just replied with, “Yep.” Wow. I walked away before I junk punched him.
I fed my baby and looked up blood gases on my ipad. They were high enough to be concerned. I started feeding Jayson and he started gasping for air while eating. This was the first time he had done it while being awake! I took his food away for a few minutes and he was still struggling to breathe while wide awake. Just then, the team of doctors walked in. The attending doc said, “So it looks like Jayson had another good night. His oxygen levels are looking good on .5 liters of oxygen, so we can send you home on .5 liters. His CO2 levels were a little high, so we’re going to have you follow up with your pediatrician once you get home and we’ll have you do the swallow test as outpatient. And you can follow up with ENT in a couple of weeks to see about the obstructive breathing. We’ll send you home with a monitor for now. We’re feeling pretty good right now.” I just stared at them. A good few seconds went by and I took a deep breath. Finally, I opened my mouth. First I let out a chuckle. “So you feel good about sending Jayson home today?” “Yes, yes we do.” “Really? My son is still struggling to breathe. He’s now even obstructing while awake! While eating! My son is doing much better with the RSV. It’s true. But he is not here because of RSV. He is here because he stopped breathing in my arms. And now, he is worse! He is much worse than he was on Sunday when he was admitted! He wasn’t gasping for air every minute of the day on Sunday. I’ve wondered if I’m just being an overprotective first time mother, but I’m not. Last time we were here, only one of the doctors was able to catch a glimpse of Jayson’s obstructive breathing. At the beginning of the week, no one had any idea what I was talking about. Now, you can ask any doctor and any nurse at any given time to come in, and you can see it. All of the nurses have seen it for extended periods of time. And they’re all concerned!! I hate to get all psycho on you, but if you plan to send my son home today, I hope you’re prepared to be held legally liable for whatever happens to him. We will be back, and I hope for your sakes that he’s not even worse off than he is right now!” They seemed surprised. The attending doc seemed to digest some of it. I’m not sure if it was the statement that Jayson was worse now than he was in PICU that got her, or the threat of a lawsuit, but she stopped and thought for a minute. She said she would call the Pulmonary Specialist to see if he would talk with her and give her any reason to keep him, and see about doing the Swallow Test today. Then they walked out the door.
I felt so alone. I needed help. I needed Mike, and he was in Zions for the final 2 credit class he needed to graduate. I needed my mom, and she was two hours away. I needed my nurse friends who would back me up, but I had nobody. Just me. I called the Family Relations Coordinator and she didn’t work on the weekends. I called my friend’s mother-in-law who is a nurse and she didn’t answer. I called Laura, my mom’s best friend and she didn’t have a lot to say. Finally, my friend’s mother-in-law called me back. She told me I had every reason to fight, and that I should. She said I did good threatening the lawsuit. I prayed hard. I called family and asked them to pray for a reason to keep us. I knew we weren’t supposed to go home yet.
My nurse came in and told me that we were going to do the Swallow Test and I could come with him. Just as we were about to leave the room, a new doctor came in. He was the Pulmonary Specialist. I had to leave Jayson on his own so I could visit with the doctor. He was the very answer to my prayers. I don’t know that a prayer of mine had ever been answered so clearly. He was the first doctor to sit down, make himself comfortable and talk with me. He listened. He wrote things down. He nodded his head. He asked a lot of questions and he gave credit to my answers and observations. I mentioned I had videos of Jayson trying to breathe. I showed them to him. He took me to the computer and showed me Jayson’s x-rays from February and March. He showed me his blood gases and what the numbers meant. He showed me other tests that had been done and why. Jayson was wheeled in after about 40 minutes. He examined Jayson briefly and told me with confidence, “Jayson has what is called Laryngamalacia. It’s an obstructive airway, a floppy airway. He has flaps that open and close when he breaths, and his overlap in a way and down open all of the way back up. Due to apneatic episodes, they sometimes lock down and don’t let any air through.” He drew diagrams on the board. He showed me things using his hands to demonstrate. Everything for a moment in time made perfect sense. I felt the spirit so strong and felt like I let out the biggest sigh of relief, and as I did all of the stress, fear, sorrow, and concern left my body. I knew Jayson was going to be okay. We finally knew what was wrong, thanks to this man. I asked him what needed to be done at the hospital to help Jayson. He said he needed to stay another 24-48 hours to be observed and get Jayson back on high flow. He needed to be on at least 2-3 liters to keep his airway open. He said he needed to be on high flow at home as well. Jayson needed another blood gas test, and his CO2 levels needed to be below 46. I felt so relieved and validated. I was a good mom, and I did the right thing fighting for my boy.
Then we got more news. Jayson failed his Swallow Test. What does this mean? I didn’t even know what it was. The nurse said he failed on thick and thin liquids. The doctor explained Jayson has been getting liquids in his lungs because his airway wasn’t closing off when he ate. He was also refluxing, and that liquid was again going into his lungs. They called it silent reflux, since he wasn’t showing any signs of it. Wow. That explained why he wasn’t gaining weight, and even more why he was having a hard time. The nurse said he would need an NJ feeding tube, into his intestines. Terrible. But it’s what my son needed. Jayson had not eaten for many hours and I hadn’t seen the team of doctors, which made me nervous. There’s no way they would try and fight what the Pulmonary Specialist said, would they? They finally came in and told me that Jayson would be going back on high flow, but they were trying to avoid having to go back down to PICU to do it. That was taking some time. They said they were going to get him set up with a NG tube in his stomach. I asked about the NJ tube the nurse said was recommended. The docs mentioned the NG was easier to deal with at home. Again, we’re talking about going home.
The nurse came in with the tube materials and prepared to teach me. She said I needed to be trained in how to place them, because they often come out. Are you kidding me?? Jayson squirmed and screamed as the nurse placed the tube and she tried to explain to me what to do. I could hardly handle the screaming, but I was trying to focus on what she was telling me. Just then, the attending doctor came in and needed to talk with me. Well, the baby was screaming and in pain, and I was trying to help the nurse tape on the tube. The doctor kept talking and even moved and squatted down so “I could focus on her and what she was saying”. She kept calling my name and asking me to focus. I could not even believe her. I don’t remember much about what she said. Something about high flow. No PICU. 1 Liter. And going home tomorrow. I’ve never wanted to punch anyone more than I did her at that moment.
Just as I finally broke down in tears, our home teacher and good friend Anthony Faulker and his wife walked in. I needed him so badly. I needed a man to help me fight. The respiratory therapist came in to hook Jayson back up to high flow. We bombarded him with questions, and he was so kind and patient. He answered many of our questions, and ultimately told us there were some things he couldn’t tell us because the hospital was owned by an Insurance company which paid his salary. It just so happens that it’s my insurance company. He also eluded that the insurance company doesn’t like us to stay too long, because they usually end up paying for it, and so that’s why the doctors are pushing us out the door. We were about to pass up that secret number of days. We felt that pressure the first time he was hospitalized by the other doctors at around six days, but they backed down without me fighting against them because they could tell that Jayson just wasn’t ready. These doctors weren’t so observant or understanding. I told the respiratory therapist that the doctor mentioned something about us going home tomorrow and he was surprised. He said he’d suggest waiting at least 48 hours, but he can’t argue with the doctors. Our nurse had overheard this entire conversation and she asked if we’d like to ask these tough questions to the doctors. She said she was interested in hearing the answers to these questions as well.
The attending doctor came in with her guard down. She was apologetic and back-pedaled a lot. She said she must have been mistaken if she said he would be going home tomorrow. She wanted to give him all the time he needed. Lie. I told her that I wanted Jayson on at least 2 liters on high flow, because that’s what the Pulmonary Specialist said. I told her I understood what she was doing, and that she didn’t want Jayson to end back in PICU because that costs the hospital more money, so to avoid it she had to start him on 1 liter. She seemed surprised I figured it out. She stuttered and said, “Oh, oh, you know what happened? I forgot to tell you, but it was all miscommunication. The Pulmonary Specialist told me that he wanted Jayson to start out on 1 Liter and to work his way up if he needed it. See, he told us two different things. No problem. If you feel more comfortable with him on 2 liters, we’ll do that.” Lie. It was at that point I said, “Well Doctor, the thing is that the Pulmonary Specialist came in and sat and listened to me. He examined my son. He explained all of the x-rays, blood tests, and all the other things you guys have done to him at this hospital. No one else has. He validated my concerns, and he gave my son a diagnosis. He explained it to me and drew me diagrams so that I would understand. He was real and listened and he was honest with me. That man is a good doctor. I have trust issues with you. You’ve lied to me many times and your team has rarely examined my son. When it comes to believing a doctor, I’m going to trust the Pulmonary Specialist and he told me my son should be on 2-3 liters on high flow while at the hospital and then at home.” She told me okay, smiled, asked if we have any more questions, then said she’d see us in the morning.
Wow. I almost collapsed from exhaustion at that moment. I had fought many battles for my son that day, and we were victorious. It was at that moment that I felt the heavy, heavy burden that I had felt for months leave my body. That was it. I had fought the fight I needed to fight. We had found out what was wrong with my sweet boy. I knew that was it; there were no more problems. The spirit confirmed to me that Jayson was finally in good hands and all was going to be well. I felt fresh, renewed, and at peace. Finally.
Mike finally walked in the door! I was so excited, relieved and mad at the same time. I missed him, and I needed him. But I was so mad he was gone and left me to fight this battle all on my own. He seemed so concerned and upset, both about me and Jayson. It was nice spending the rest of the evening as a family.
Mike and I decided to get some dinner and take a moment away from the hospital room now that things were under control. As we came back upstairs, we saw the nurse was in the room with Jayson. Jayson’s left side of his face was huge, cherry red, and swollen. His eye was nearly swollen shut. I asked what happened. Apparently, in the short period of time that we were gone to dinner, Jayson woke up and pulled the tape off of his face and attempted to pull the feeding tube out. It was obvious he was allergic to the tape, and the action of quickly pulling it off caused great irritation. I asked what we could do about it, and she said she put some cream on it and contacted the wound team, but they couldn’t come in until the following day. His face was super hot from the irritation and he was starting to fuss. We got some ice and put it on his cheek which helped with the redness and swelling. Jayson kept reaching towards his face, which told us he was in pain.
Sunday, March 18, 2012
We needed to check Jayson’s blood gas levels that night to see if the high flow was doing its job. He had a hard time getting to sleep and staying asleep again do to the continuous feed and his sore cheek. I held and rocked him from 1:00-3:00 AM until he could get his blood gases checked. He seemed super uncomfortable with the feeding tube. He was super wiggly and fidgety, and I had to hold him and rock him to keep him asleep. Surprisingly, he slept through the test and didn’t even wake up when he was pricked. I went to bed at 4:00 AM and got a couple of hours of sleep. The next morning, the nurse told me his CO2 levels were at 46. Just what we needed to go home. The team of doctors came by and this time asked how I was feeling about things. I said it seemed like Jayson was doing much better on the high flow, but he had a rough night. He finally wasn’t gasping for air the entire night! But, he was struggling to adjust to the feeding tube and couldn’t get comfortable. I wanted one more night at the hospital to see if he could calm down and get a good night’s sleep before I would feel comfortable taking him home. I also needed to learn a lot more about the feeding tube and high flow at home. They conceded and said it would be fine if we stayed one more day.
The wound team came that morning and looked at Jayson’s cheek. It was a lot better than the previous night, but was still very red and irritated. It had even broken out into bumps and a rash. The wound team used a different tape on his cheek which is more hypoallergenic. It seemed to work better.
Monday, March 19, 2012
Jayson slept like a champ that night. I didn’t. I stayed up until 4:00 AM again watching him breathe, making sure he was in great shape if we were to go home. I knew it was time for us to go home. I think the team of doctors was more excited to hear that than we were to say it. We prepped for discharge and it was chaotic. Finally we got loaded up in the car and headed for home! I was so happy to be going home to our cute puppy and to cuddle my baby on my very own couch. Especially knowing he would be okay hooked up to all of the equipment he needed. I was told to hurry home because IHC Home Care would be to our house at 4:00 PM to hook up our equipment and a nurse would be by shortly after to help with Jayson’s feed. He was going to be hungry around 5:00 PM. I got home and got a welcome home from Maya that made me cry. She was so excited to see us and I could tell she was so worried. We got all settled and patiently waited for the Home Care people to come. Well… 4:00 PM came and went. 5:00 PM came and went. Jayson was hungry! At 5:15 PM I got a phone call that the equipment people were late, and the nurse couldn’t come help me with feeds without the equipment. I remember seeing the bolus feeds in the big syringe at the hospital. I pulled out our big syringe, mixed up some formula, and started feeding the little guy. I hoped and prayed I was doing it right. It was nearly six before the equipment people and the nurse showed up. The nurse was cranky because she was really behind schedule thanks to the equipment people. She rushed through the feeding system so quickly and I was so tired, I really wasn’t sure what to do. The respiratory therapist with the oxygen equipment took his time and explained things pretty well, but again, I was tired so I didn’t remember much. I was so incredibly overwhelmed. Mike came home as the respiratory therapist was finishing up. As he walked out that door, Mike and I looked at all of the equipment in our living room and at each other. We gave one another a hug and let out a large sigh. We’d figure it out, somehow.
No comments:
Post a Comment