I was talking with someone recently, and she said "I just don't know how you do it, and I'm so proud that you are cause you know you didn't have to. You could have put him in a home or given him away." Mind blown. Yes, long time ago that's probably what people did. Not us, never us. Declan I need you to know it was never a option. Never a no, not even a thought process to not keep you, and love you. We will always love you, no matter how many hospital stays we have to do or surgeries or never getting a good night sleep. You are our baby boy and we will never give you up.
I don't want to shame others if this is what they had to do, but the world has changed, and I hope they gave it a chance before doing so, because you never know what you are capable of until you are pushed to your limit time and time again. The world makes you tough, but you gather your strength from your family. Declan has changed this family for the better, and we will always fight for him.
Now here is where I'm going to tell you about our close call. It isn't pretty, it was terrifying. You can skip this section if you want.
We almost lost him.
Many of you know we recently had a close call with Declan. He had a respiratory arrest at the home, right in front of me. 911, EMS, Life flight all involved. It was not pretty, not peaceful, it was so terrifying to me, I still shake when I talk about it.
January 3, 2018
Declan was still sick, after being sick since November and spending a week in the hospital, he was better from the flu, but still had a respiratory issue. Still coughing, still gunky, still not our happy boy. All week I kept telling everyone he needs to go to the hospital he isn't getting better. We saw his doctors, did the xrays, we were doing his breathing treatments. Nothing was changing, how horrible is that to be sick for so long. I was taking him back to the docs having our pedi doc talk to our pulmonary doctor to come up with a plan. Something different something new because Declan was not getting better. We had all the equipment at home. This was his regiment for the breathing treatments. Nebulizer with Albuterol, suction, cough assist 5 sets of 5 with suction in between, and manual chest percussion when needed (Declan calls it Tapping). We were doing everything the hospital would do, so my response from everyone was "just keep doing what you are doing." Declan was just taking a long time to recover, the illnesses are really bad this year, your doing everything the hospital would do.
K happened to be home sick, fighting a bug, she was quarantined to her room. Normal sort of day for us, Declan woke up, I started suctioning him, normal stuff. Then I turned him onto his back after sleeping on his side. He said "tap, tap" and started gasping for breath, started turning white. I turned him onto his side and started pounding on his side (probably harder than I needed to but it worked), it must of dislodged something enough for air to get back into the lungs, it was probably only 30 seconds but it felt so much longer. K came in to check on things I think I yelled for her, I was to rattled to remember. I was again on the phone with the doctors, scared, worried, feeling everything. Declan was back to normal (sick normal) talking, sitting up, alert. Doc said we will check him at his appointment. Got him dressed and off we were to the docs. They listened to him, said he sounded fine, a little junk in the left lung, and just keep doing what you are doing. I get it not wanting us to go to the hospital, RSV, flu are everywhere there, but Declan was not getting better then add this scare, I should have ignored everyone and just taken him then. That night I had a talk with K, went over if Declan stops breathing again what I need her to do if she is here. Made sure she knew our address to tell 911, to open the front door, and if things got really bad, go get a neighbor. I didn't think she would need that plan so soon. I thought this was one of my worst days, I was wrong.
K happened to be home sick, fighting a bug, she was quarantined to her room. Normal sort of day for us, Declan woke up, I started suctioning him, normal stuff. Then I turned him onto his back after sleeping on his side. He said "tap, tap" and started gasping for breath, started turning white. I turned him onto his side and started pounding on his side (probably harder than I needed to but it worked), it must of dislodged something enough for air to get back into the lungs, it was probably only 30 seconds but it felt so much longer. K came in to check on things I think I yelled for her, I was to rattled to remember. I was again on the phone with the doctors, scared, worried, feeling everything. Declan was back to normal (sick normal) talking, sitting up, alert. Doc said we will check him at his appointment. Got him dressed and off we were to the docs. They listened to him, said he sounded fine, a little junk in the left lung, and just keep doing what you are doing. I get it not wanting us to go to the hospital, RSV, flu are everywhere there, but Declan was not getting better then add this scare, I should have ignored everyone and just taken him then. That night I had a talk with K, went over if Declan stops breathing again what I need her to do if she is here. Made sure she knew our address to tell 911, to open the front door, and if things got really bad, go get a neighbor. I didn't think she would need that plan so soon. I thought this was one of my worst days, I was wrong.
January 4, 2018
It started like every other day. Woke up at 7:15 drove D to school at 7:30, (K asked for one more day to get better), came home and back in bed by 8:10am. Hubs went to work at 8:30. Declan was still sleeping so I went back to sleep as well. Normal everyday stuff.
10am Declan woke me up, he started calling for me through the monitor. I rolled out of bed, grabbed my phone and went into Declan's room. He was on his side, he sounded really gunky so I started suctioning his nose. I got a lot out, I went to move onto his mouth so I turned him onto his back. He looks at me and starts saying "tap tap". Here we go again I thought. I was pounding on the side of his chest, he turned white, and his face went blank. I must have been yelling at Declan because K came in. I said something on the lines like nope I can't get him back and told her to call 911. It was probably seconds, felt like minutes. I was trying to suction to see if I could get something, while pounding, I even tried the cough assist to try to move something. Nothing was working. The 911 dispatcher had me put Declan on the floor and start CPR. 30 and 2, 30 and 2. Declan released a breath, but it wasn't a normal breath it was like the air was just leaving his lungs automatically. I don't know how to explain what it was like. Declan was pure white, the oxi meter was going off, the suction machine was on and loud, the cough assist was on as well. Declan was not there, his eyes where half closed and lifeless, no response. I was beyond terrified I was in survival mode. Fight or flight right, I was there fighting for Declan. We figured it out later the EMS got there 6 mins after the call. I think that is pretty damn awesome for response time. First guy came in calling for us. Later found out his name is Cory (Thank You Cory!!!). His response was quick, "move", I jumped out of the way he continued chest compression's. We got off the phone with 911 (thank you 911), and told K to call dad, went back to watching Declan. Hubby said later he got the call from K, she was crying said Declan stopped breathing and they are working on him. He grab his bag and left work. I am sure it was a very scary situation for him. I would never want to get one of those phone calls either. He tried to call me a couple of times but of course I couldn't answer. As he hurried home, all he kept repeating is "breathe Declan, just breathe". Cory EMS was the only one there so far, I asked him if I could suction, yes was his reply. I grabbed the hose and worked on Declan it was within seconds I got a hold of a long thick yellow mucus plug, it just kept coming I ended up grabbing it with my hand and wiped it on a blanket. I believe my response was "yuck". Still no change with the way Declan looked, white not responsive. Bam! Everyone else showed up, and I mean everyone, fire department, cops, county sheriffs, detectives. We found out later the EMS team went down a dead end road that is right by us, and of course couldn't get past the barriers, so Cory with all his gear jumped over the barrier and ran to our house while the team turned around. Pretty cool of him. With everyone showing up I had to get out of the way, they wanted a statement. I moved Declan's power wheelchair out of the way, and I looked back at Declan before I left the room. On the floor, lifeless, and Cory the EMS saying to his team, "he has a pulse". Hope, it gave me hope. I can't explain it, but as soon as those first responders got there, it's was like taking a deep breath. I was still very shaken up, and worried, but a little of the stress of trying to save my child's life was lifted. Declan still wasn't getting a lot of air if any, but he was alive. It gets confusing at this time because I wasn't in the room and I didn't see what was going on. I've read the report, but it wasn't any help either. We believe as soon as I was able to get the mucus plug out, that was the turning point, and Declan just had to have some help to get back to normal. Some oxygen, some stimuli, but I don't know if they suctioned more and got more out, or just gave him breathing support. I was busy repeating my statement of what happened, answering questions, they really don't give you time to breath. Just rapid questions one after the other. Your time is skewed, seconds feel like minutes, minutes feel like seconds. All the while K was with me, watching, on the verge of crying, shaking. She really did an awesome job she did exactly what she was suppose to do. All we could do is wait. Some random guy would come in every once and awhile and ask a question about Declan, what's his name, what's his normal skin color, is he verbal, is his chest normally like that. Asked which hospital to go to, which of course had to be the closest children's hospital (45 mins away), we learned from previous hospital visits that Declan is too complex for just any hospital, no one else will touch him. I don't know what they thought when they came into my home, room full of medical equipment, me spouting out medical jargon. Somewhere in all of this they had called for life flight, they were on their way. Hubby called, he was almost home, no word yet if Declan was okay. Every once and awhile I would hear Declan cry, it was soft and weak, but it was there. Sitting and waiting, that's all we could do, asked if they could call anyone. I know it seems weird, but I didn't want them to call the grandparents, and I didn't want to talk to anyone until I knew Declan was stable. So I put it off but I did call my sister, it was short, come and get K right now, Declan isn't breathing, they are working on him. They did tell me my neighbors were outside if we needed them, which I appreciated, again I didn't want to talk to anyone until I knew Declan was going to be okay. One gentleman came up and said life flight is here. So to me I was a little confused we live in a suburb not tons of room. I asked where they landed, they said right out front. I was surprised it fit. At this point I was still in my pj's so I excused myself so I could get some pants on at least. When I came out hubby was there, trying to see into the room. I called for him, and he hugged us so hard, and just said I'm sorry over and over. We stood together, talking, trying to fill him in. I asked if I could go on the flight with him, and didn't want him going alone, and there was no way I could drive, I was still shaking through all of this. I don't think I stopped till hours after everything was done. We finally got the voice saying " mom, dad do you want to come see Declan." I remember releasing a long breath, and walking into Declan's room. He was on the floor where I left him, much different picture. He was awake, with a oxygen mask on, still a little pale, but not like before. We walked in and he saw us and said "mom, dad" such great words to hear. We knelt down by him and just talked to him. Declan was a little dazed and groggy, he would look around and you could see it in his expression "why am I on the floor?" It made me laugh, "yep your on the floor, you scared me, but your going to be okay." Things moved quickly after that. We were getting ready to go. We made sure to grab Declan's favorite blanket and stuffed animal that he could take with him. I got on my shoes and coat and one of the flight team members walked me out to get into the helicopter, while dad stayed behind to help load up Declan. I remember walking out and seeing for the first time all the help that came, and the life flight that landing in front of my neighbor's home. I believe they were able to land cause my neighbor had not yet planted his tree's in the park strip which gave enough room for the helicopter's blades, I teased him about later to not plant any trees cause it is now my life flight landing zone. I saw my neighbor's bunched together a house down, don't worry I saw you, I did a half wave to acknowledge you, but I was going for a ride. Walking to the helicopter was... I don't know the feeling, I believe I was in a state of shock and everything was rolling off. All I knew was Declan was breathing, it was running through my head, we're good, we're good. They got me strapped in, let me tell you there is not a lot of room in those things, it's tight. They left me in there and went to go get Declan. That's when I pulled out my phone and sent a small text to family, it was short and to the point. "Declan stopped breathing. Being life flighted to hospital. Breathing again. Still groggy." I sent that at 10:45am Forty-Five minutes later, that's all it was. I'll never forget those 45 minutes though. A few minutes later and they were loading Declan into the helicopter, he was calm. I thought he was going to be crying, but he was just eerily calm. Then we were off, rising up, and up. It was a very smooth ride, and the team was great, super nice to me and Declan. Before we knew it, we were at the hospital, and unloading Declan. Again I was repeating my story, filling in medical history, it was a fast paced conversation. Every little beep, every deep breath Declan would take would set me on edge. At one point it looked like he was turning white again, and I just stopped what I was doing and said to someone, "watch", but Declan recovered quickly and I started to breath again myself. They brought in Xray, and put in an IV. At some point dad, and grandma showed up all kind of blurring as to when. Someone asked me if Declan needed a life saving procedure did we want that. There was no hesitation, yes, do everything you can. The staff was working on getting us to the PICU. Now that things seemed to be calming down, they showed us the xray his left lung was completely collapsed, or filled with junk. Best guess was that a mucus plug was blocking his right lung and since his left wasn't working it caused a respiratory arrest. His viral panel showed negative for any illness. It was some kind of respiratory illness, this year has been so bad with the flu, rsv, etc that Declan was just hit with one after the other and couldn't recover on his own. After they all left I was able to sit down and take a breath. I asked hubs how I looked? His reply was beautiful, grandma said horrible. lol. I may have agreed with grandma at the time with how I felt, but my son was alive and if everyone needed to see me without make up and not dressed then it's a small price to pay.
At the hospital
We had many concerned visitor's, neighbors, friends, family, even Declan's Pediatrician brought his family and came to visit him. We spent 15 days in the hospital. Dad and I took shifts, me the weekdays, dad the weekends, unless I really needed a break and a good night sleep then he would come up and take over. For the first week, we keep up with the breathing treatments every 4 hours around the clock, one day/night every 2 hours. Oh and of course either mom and/or dad had to do it, cause Declan won't just let anyone touch him. We were exhausted, and we weren't seeing improvement. Using everything, a vest that shakes the chest, cough assist, suction, percussion therapy. It wasn't working. We were at wits end, we needed a new plan. Looking into getting a bronchoscopy to check his airway, it came with a lot of complications. A lot of "could happens". It was risky. They made us go through planning in case of those what ifs, learning about the trach, what our decision would be. Counseling, a lot of talking. Declan's life plan, and just in case what we wanted for him if he passed. I would have to say this hospital stay was one of the most stressful, emotional, exhausting stays we have ever had.
Pulmonary came in with one more option before the weekend and if it didn't work we would go ahead with the bronc procedure on Monday. It was called the Metaneb. Think of it as inflating a tire. It pushes air into the lung as a pulse. Sounds like a train, choo choo choo choo. They are usually used on CF patients, but thought it might work on Declan. I really do love this machine, it is the only thing where we started to see improvement. It took the weekend and most of the week, but by the end of the week we were finally coming home.
Home
Being home was a wonderful feeling, but created other stresses. Since that horrible day, I was having nightmares, and panic attacks. I had PTSD. I believe Declan was suffering it as well. I prepped the home, just in case it happened again. Kept the oxygen tanks close by, even got an ambu bag set up under his bed, so it could be easy to grab. Just in case. I filled out CHIRP forms, and put those all over the house.
The CHIRP program is a free service provided the Utah Emergency Medical Services for Children program within the Utah Department of Health. The goal is to ensure that up-to-date information is easily available for emergency medical services providers if you have to call 9-1-1 to assist your child with special health care needs. You can go here : CHIRP INFO to learn more about the program.
I watched Declan like a hawk. Before going to bed, I made sure there was a clear floor and path just in case we had another incident. We pulled him from school, and signed up for a home/hospital teacher to come to the house twice a week to teach him. He didn't go back to public school till May. My rules were simple, You can't be sick if you visit. If you were around someone sick, don't visit. Wash your hands before seeing Declan. My family can attest to me going crazy, I would give anyone an evil eye if someone coughed near Declan.
I did find some help with PTSD through groups online, but I think what really helped was writing it all down. Every feeling, every detail. I still get anxious, and can go over board with protecting Declan, but can you blame me. No more nightmares though.
Declan was better. He was back to a healthy little boy, who was happy and not in pain. It had been so so long since we saw him this well. We didn't go out, we hardly went anywhere, except doctors. The flu season was still going around and I couldn't chance him getting sick again. I just wanted to wrap my family up with a blanket and hold them all. The older kids were very understanding with having a crazy mom, and just rolled with it. A supportive husband, that put in hours and hours of work with Declan, and on top of working his normal job as well.
Friends helped me clean the house, neighbors brought food, and support. Everyone was very concerned about our family. I think we were the talk of the neighborhood for awhile. We didn't mean to scare anyone, but look at it this way, have you ever seen life flight that close before? What an experience! I feel more prepared for if it happens again. Let's hope not. I can do this! I now know I will fight, I won't stop, I won't back down. I've got this!
It's taken me about 6 months to finish this post, I wanted to get it just right. It's helped me heal, and express what I was feeling. I don't mean to upset anyone, this was for me, and I wanted to share our story.
Thank You.
Pulmonary came in with one more option before the weekend and if it didn't work we would go ahead with the bronc procedure on Monday. It was called the Metaneb. Think of it as inflating a tire. It pushes air into the lung as a pulse. Sounds like a train, choo choo choo choo. They are usually used on CF patients, but thought it might work on Declan. I really do love this machine, it is the only thing where we started to see improvement. It took the weekend and most of the week, but by the end of the week we were finally coming home.
Home
Being home was a wonderful feeling, but created other stresses. Since that horrible day, I was having nightmares, and panic attacks. I had PTSD. I believe Declan was suffering it as well. I prepped the home, just in case it happened again. Kept the oxygen tanks close by, even got an ambu bag set up under his bed, so it could be easy to grab. Just in case. I filled out CHIRP forms, and put those all over the house.
The CHIRP program is a free service provided the Utah Emergency Medical Services for Children program within the Utah Department of Health. The goal is to ensure that up-to-date information is easily available for emergency medical services providers if you have to call 9-1-1 to assist your child with special health care needs. You can go here : CHIRP INFO to learn more about the program.
I watched Declan like a hawk. Before going to bed, I made sure there was a clear floor and path just in case we had another incident. We pulled him from school, and signed up for a home/hospital teacher to come to the house twice a week to teach him. He didn't go back to public school till May. My rules were simple, You can't be sick if you visit. If you were around someone sick, don't visit. Wash your hands before seeing Declan. My family can attest to me going crazy, I would give anyone an evil eye if someone coughed near Declan.
I did find some help with PTSD through groups online, but I think what really helped was writing it all down. Every feeling, every detail. I still get anxious, and can go over board with protecting Declan, but can you blame me. No more nightmares though.
Declan was better. He was back to a healthy little boy, who was happy and not in pain. It had been so so long since we saw him this well. We didn't go out, we hardly went anywhere, except doctors. The flu season was still going around and I couldn't chance him getting sick again. I just wanted to wrap my family up with a blanket and hold them all. The older kids were very understanding with having a crazy mom, and just rolled with it. A supportive husband, that put in hours and hours of work with Declan, and on top of working his normal job as well.
Friends helped me clean the house, neighbors brought food, and support. Everyone was very concerned about our family. I think we were the talk of the neighborhood for awhile. We didn't mean to scare anyone, but look at it this way, have you ever seen life flight that close before? What an experience! I feel more prepared for if it happens again. Let's hope not. I can do this! I now know I will fight, I won't stop, I won't back down. I've got this!
It's taken me about 6 months to finish this post, I wanted to get it just right. It's helped me heal, and express what I was feeling. I don't mean to upset anyone, this was for me, and I wanted to share our story.
Thank You.
 |
| Life flight taking off. Photo by: KFD |
 |
| Declan giving a thumbs up in the hospital. |
 |
| Declan with therapy dog. |
 |
| Home!! |
 |
| healthy again!! |
