Sooo... I know I take FOREVER to post, and have only posted a few things since July, AND those things have all been about a crisis with Jett, but hopefully that is now all behind us! This is long, but it tells about our miracle. Mason was very sick Jan. 21, his birthday. He was diagnosed as having an asthmatic reaction to a virus, and I remember specifically asking the doctor if he had RSV, and I was told no. He came home from the doctor that day with a nebulizer and a bunch of antibiotics, and I was given the impression that Mason may develop asthma, but he was still too young to be diagnosed with it. So, I thought his reaction to the virus was exclusive to him. 
Here he is feeling miserable as he opens his birthday presents... not quite the reaction I envisioned when we gave him a train table and trains! Poor kid!
Tage and Jett started getting sick about the same time. Jett's nose started running Tuesday, the 25th, and then Wednesday he had a little cough and was not eating well. Wednesday afternoon it started to snow. A lot. I don't normally get nervous about my kids getting sick, but this time I was a little. I even said to Kevin that evening that all the snow made me nervous with Jett being sick. That night I slept maybe an hour. I was up all night holding Jett, keeping an eye on him. He wouldn't eat at all. I could tell breathing was a little tough for him, but I thought it was just his snotty nose. At 2am I fed him a few tablespoons of milk with a syringe, and that made me feel a little better. All I was really worried about at the time was dehydration. Thursday morning I got ready to go to the doctor for "early walk-in hours" at 8am, but didn't go because they weren't open yet because of the snow. I was able to get him to eat a little more, and that calmed me down, and I thought he was on the mend. Around 11:30am though, Kevin and I decided I would take Jett to the doctor (now open) just in case.
1:30pm, we saw the doctor. Jett was in just his diaper, and the doctor came in, took one look at him and said "You need to take him to the ER. Stat." Then he listened to his lungs and said "Yes. Go immediately. I will call them to let them know you are coming. Go right away. Don't wait. Do you have a car? Go. Now." I was SHOCKED! I really didn't expect that, and yet, I did. You see, at lunch I ate an extra big one, just in case. And I took a snack for myself... just in case. But really, I didn't think he was that bad! And I definitely didn't expect RSV, I thought he might need to be treated for dehydration and that was it.
We got to the ER and only had to wait a few minutes, before someone came down and escorted us to the Pediatric ER unit, which just opened a few months ago. Jett's temperature was 104 rectally (I had not received that high of a reading at home, although I did not do it rectally). The doctor ordered an RSV test, which we all know came back positive. Then he ordered an x-ray of his chest. At that point, on a whim (aka INSPIRATION!), I brought up the possibility of him having enterocolitis- an infection in his colon, which he is at risk for from having Hirschsprung's Disease. The doctor said it was unlikely (I knew that, he didn't really have symptoms of it, and just had symptoms of Respiratory junk) but said he would order an x-ray of his abdomen as well since it could fit on one x-ray.
When the x-rays came back, Jett received an additional diagnosis of Pneumonia. The doctor was trying to decide if Jett should be discharged, or if they should keep him overnight "just in case." But the x-rays also showed signs of obstruction in his intestines, dilation, and air, so the ER doctor consulted with Jett's surgeons at the University of Maryland, and it was determined that Jett needed to be transferred there, where the surgeons could evaluate the issue going on in this bowels. Plus, they have a Pediatric ICU, which Frederick does not... just in case.
Kevin drove down to the hospital with Tage and Mason before we left to give me some snacks, clothes, and other necessities. Poor Tage was so sick at the time. I felt so bad for not being able to be there for her, and at the time I thought it was best that Kevin stay with her and Mason while I went with Jett to Baltimore.
I rode shot gun in the ambulance and had some good conversations with the driver on the way down. Jett slept the whole way, except for one time when his IV blew and the paramedics had to remove it. I hated being up front, looking back through a small gap, hearing Jett cry, his monitor beeping, and the paramedics working and asking each other for various pieces of equipment, and not be able to know immediately what was happening, or be next to him to try and soothe him. The incident was really only a few minutes, and after one minute one of the paramedics hollered up to me that it was just his IV.
This was day 2 at the hospital. He looked and felt miserable. Notice his head bandages? IV. Can you see the little plastic medicine cup that the nurse cut in half and put on the IV in an attempt to protect it from being bumped and knocked out? We all tried to protect that IV with our lives! IV's and Jett do not mix!
The UMMC was chaos from the moment we got there. Jett was put in a room and nurses started doing an IV and blood work, oxygen, etc. It was very crowded. Soon after we arrived, the Resident Surgeon came in to see Jett. By now, his stomach was extremely distended. The surgeon jumped the gun a little and in listing things that could be wrong with Jett included the possibility of needing a 2nd pull-through surgery done. I remember leaning on Jett's bed and saying "ARE YOU SERIOUS?" He said we don't know for sure, but it is a possibility and then ordered another x-ray.
Unfortunately, Jett is an extremely difficult stick. The best of the best had a difficult time getting an IV. This results in Jett being stuck a million times, and lots and lots of crying. And then... The crying stopped. The poking did not. Since we had arrived, breathing had become increasingly difficult for him, and he had become very lethargic. Jett was switched from a nasal cannula to the VapoTherm, and was on the highest level of pushed air and oxygen that he could be on before needing to be put on a ventilator. The nurses said they were worried that he had a blood infection, and that is why he was so lethargic. He was then transferred to the ICU (he was in intermediate care before). I went into the bathroom and cried. I couldn't help it. I'm usually able to hold myself together but when I stepped into that bathroom it all came out without me being able to hold it in. I was running off of about 1 hour of sleep from the night before, and extremely poor sleep for the week prior with Mason being so sick. I cried for a few minutes and then left the little meltdown in the bathroom, came out, and followed Jett down to the ICU.
Things settled down in the ICU, the only thing he had to have done there was an irrigation of his colon and he slept. At this point, I was truly terrified that Jett might not survive. I tried to get comfortable on a small, hard chair, and I slept for a few minutes. I never fell into a very deep, restful sleep, but I remember waking up and realizing that I had dreamed about Jett as a little boy. I woke up feeling calm and filled with faith that he would be okay.
The test results were negative for a blood infection, so he did not need a transfusion, and because Jett wasn't desatting anymore he was allowed to move back into a room in Intermediate care (but still under ICU status) at 4am. We got settled there and around 5am I fell asleep, in a much more comfortable recliner. And then the surgeons rounded at 6am. Dr. Strauch (Jett's surgeon who did his pull-through) was there and brought with him some optimism. He always looks me in the eyes and says "We are going to take good care of him. He is going to be okay. He will get better." He says it in such a confident, believable way, and it is so comforting to me. His assessment of Jett was good, his stomach was getting smaller and his belly was soft, not hard (hard would be baaaad). The previous night he had put him on Flagyl, an antibiotic for the colon... just in case he did have enterocolitis.
Kevin came and we spent the day talking to nurses, doctors, and anxiously watching Jett's monitors. The days all kind of blur together for me now, but none were as crazy as the first night. I could not believe how quickly Jett had gone down hill. It was such a blessing that he was already in Baltimore, where he needed to be, before he became critical. Otherwise, the situation would have been much worse and I'm positive we would have been transferred by ambulance with sirens, or helicopter. The whole day was guided by the Lord. I took him to the pediatrition... just incase. I ate an extra big lunch... just in case. I suggested enterocolitis...just in case. The doctor transferred us to Baltimore... just in case. Jett was put on Flagyl... just incase. All things that got him the care he needed, exactly when he needed it. It was amazing.
While Jett was in the hospital, he had at least 20 different IV attempts and that doesn't count all the blood draws he had to have! He had an IV in his arms, hands, feet, head, and (gasp) neck. Not cool. I hated every second of IV and blood sticks.
One day, an incident occured that was particularly shocking to me. I realized that even a 3 month old REMEMBERS, and REACTS strongly to negative situations. Jett's vapotherm tube (goes in his nose) had come out, and so had his NG tube (goes up his nose and into his stomach). The nurse went to put the vapotherm back in his nose and as he (male nurse) came close to his face, Jett held his breath, started grunting, crying, and flapping his arms at the tube. The nurse pulled back, let Jett calm down, and then tried again. Same thing happened... held breath, grunted, cried, flapped arms at tube. The nurse pulled back, and let him calm down and tried again. SAME thing happened. Only this time the nurse just dodged Jett's arms and put it in anyways. I was so amazed at how strongly Jett had reacted to the situation. He KNEW something was about to happen that he did not like, and he tried to do something about it. Sad.
This picture was also taken on Day 2. It was so hard because we didn't know what day Jett was on with the virus, and so we didn't know if the worst part was still to come. Luckily, that day and the previous night were the worst, and it was just a slow downhill battle from there.
Right after that incident, the nurse tried to put the NG tube back in his nose. He put it down, and Jett started gagging. The nurse kept going, and had it all the way in, but Jett did not stop gagging. In fact, his monitors started alarming because he was not breathing. The nurse quickly pulled it out and it was decided that for the night he did not need his NG tube. Jett did not want to be messed with that night!
Another thing I really didn't like was Respiratory Therapy. It was very necessary, but not cool. The therapist would do deep suctions up is nose and down his throat, and then also just through his mouth and down his throat. You wouldn't believe the junk they would pull out of Jett! It was gross. When Jett started getting a lot of mucus in his mouth and nose and was blowing bubbles with it, I would grab the suction and suck it up just at his lips or at his nostril... man, sometimes I wish I had one of those things at home! They are powerful! It would be useful for Mason's constant runny nose when he is sick, or even mine! I really want one... bummer.
The rest of Jett's hospital stay just felt so long. He was there for 8 days, and I never once left. I did leave the floor two times to buy some food, and I went to a "Family Room" multiple times a day to access some food we had put in the fridge there. Otherwise I was always right next to Jett.
There was also a day that it took an hour and a half to get like 1ml of blood from Jett. Looking back now, I wish after the first 20 minutes I would have had a hissy fit and said ENOUGH! It was so ridiculous. It was also at 4am. at about 5:40am I finally got Jett back to sleep, only to have the surgeons start rounding on him at 6am! Every 20 minutes after that, someone was coming in to listen to his lungs and do their assessment on him, and each time I would get him back to sleep and it would happen all over again. The little guy was SOOO exhausted! Unfortunately the next person that came in the room at 7:30am was the main Doc and I just started laughing, because I wanted to cry (I myself was also very tired!) He inquired as to why I was laughing and I tried to say nevermind, but he persisted and I told him about the 1.5hour blood stick and the constant interruptions and he said he'd come back later and let Jett sleep. He could see that Jett's stats were all okay on the monitors and he was no longer critical (this was about day 6 of his hospital stay).
It was such a relief to be transferred to the Pediatric unit on Day 7. Jett was able to have his oxygen removed that night, he was nursing again, he had no tubes and no IVs, and we also had our own room.
That evening Jett's surgeon stopped by. It was funny, because he said he was kind of there on a social visit, and I thought "Oh? You want to chat it up with me? Weird." but really he was there to talk about Jett, his RSV, his Hirschsprungs, and Jett's next office visit. So by social, he meant "unofficial medical talk." He looked at Jett and said "He looks SO much better than he did those first few days. The first two days were pretty scary, he was really walking a fine line between needing to be intubated. I am so glad he is doing so much better." When you have a doctor say something like that, you realize even more the dire situation you were in. Doctors don't always open up like that, saying it was very scary and they were worried. He also said that we'll never know if Jett would have developed eneterocolitis, but that it was better safe than sorry to give him antibiotics to treat it. When you get sick, your digestive system slows down, which in Jett's case puts him at a higher risk for developing enterocolitis when he is ill.
The next morning, the doctors rounded on Jett at 7am. and when they finally got to the part about being discharged, I had a hard time fighting back tears, I was just so happy that once again, we would really be taking Jett home. You can bet I said a prayer of gratitude. Our ordeal was over and we could be reunited as a family again.
Here he is feeling miserable as he opens his birthday presents... not quite the reaction I envisioned when we gave him a train table and trains! Poor kid!
Tage and Jett started getting sick about the same time. Jett's nose started running Tuesday, the 25th, and then Wednesday he had a little cough and was not eating well. Wednesday afternoon it started to snow. A lot. I don't normally get nervous about my kids getting sick, but this time I was a little. I even said to Kevin that evening that all the snow made me nervous with Jett being sick. That night I slept maybe an hour. I was up all night holding Jett, keeping an eye on him. He wouldn't eat at all. I could tell breathing was a little tough for him, but I thought it was just his snotty nose. At 2am I fed him a few tablespoons of milk with a syringe, and that made me feel a little better. All I was really worried about at the time was dehydration. Thursday morning I got ready to go to the doctor for "early walk-in hours" at 8am, but didn't go because they weren't open yet because of the snow. I was able to get him to eat a little more, and that calmed me down, and I thought he was on the mend. Around 11:30am though, Kevin and I decided I would take Jett to the doctor (now open) just in case.
1:30pm, we saw the doctor. Jett was in just his diaper, and the doctor came in, took one look at him and said "You need to take him to the ER. Stat." Then he listened to his lungs and said "Yes. Go immediately. I will call them to let them know you are coming. Go right away. Don't wait. Do you have a car? Go. Now." I was SHOCKED! I really didn't expect that, and yet, I did. You see, at lunch I ate an extra big one, just in case. And I took a snack for myself... just in case. But really, I didn't think he was that bad! And I definitely didn't expect RSV, I thought he might need to be treated for dehydration and that was it.
We got to the ER and only had to wait a few minutes, before someone came down and escorted us to the Pediatric ER unit, which just opened a few months ago. Jett's temperature was 104 rectally (I had not received that high of a reading at home, although I did not do it rectally). The doctor ordered an RSV test, which we all know came back positive. Then he ordered an x-ray of his chest. At that point, on a whim (aka INSPIRATION!), I brought up the possibility of him having enterocolitis- an infection in his colon, which he is at risk for from having Hirschsprung's Disease. The doctor said it was unlikely (I knew that, he didn't really have symptoms of it, and just had symptoms of Respiratory junk) but said he would order an x-ray of his abdomen as well since it could fit on one x-ray.
When the x-rays came back, Jett received an additional diagnosis of Pneumonia. The doctor was trying to decide if Jett should be discharged, or if they should keep him overnight "just in case." But the x-rays also showed signs of obstruction in his intestines, dilation, and air, so the ER doctor consulted with Jett's surgeons at the University of Maryland, and it was determined that Jett needed to be transferred there, where the surgeons could evaluate the issue going on in this bowels. Plus, they have a Pediatric ICU, which Frederick does not... just in case.
Kevin drove down to the hospital with Tage and Mason before we left to give me some snacks, clothes, and other necessities. Poor Tage was so sick at the time. I felt so bad for not being able to be there for her, and at the time I thought it was best that Kevin stay with her and Mason while I went with Jett to Baltimore.
I rode shot gun in the ambulance and had some good conversations with the driver on the way down. Jett slept the whole way, except for one time when his IV blew and the paramedics had to remove it. I hated being up front, looking back through a small gap, hearing Jett cry, his monitor beeping, and the paramedics working and asking each other for various pieces of equipment, and not be able to know immediately what was happening, or be next to him to try and soothe him. The incident was really only a few minutes, and after one minute one of the paramedics hollered up to me that it was just his IV.
This was day 2 at the hospital. He looked and felt miserable. Notice his head bandages? IV. Can you see the little plastic medicine cup that the nurse cut in half and put on the IV in an attempt to protect it from being bumped and knocked out? We all tried to protect that IV with our lives! IV's and Jett do not mix! The UMMC was chaos from the moment we got there. Jett was put in a room and nurses started doing an IV and blood work, oxygen, etc. It was very crowded. Soon after we arrived, the Resident Surgeon came in to see Jett. By now, his stomach was extremely distended. The surgeon jumped the gun a little and in listing things that could be wrong with Jett included the possibility of needing a 2nd pull-through surgery done. I remember leaning on Jett's bed and saying "ARE YOU SERIOUS?" He said we don't know for sure, but it is a possibility and then ordered another x-ray.
Unfortunately, Jett is an extremely difficult stick. The best of the best had a difficult time getting an IV. This results in Jett being stuck a million times, and lots and lots of crying. And then... The crying stopped. The poking did not. Since we had arrived, breathing had become increasingly difficult for him, and he had become very lethargic. Jett was switched from a nasal cannula to the VapoTherm, and was on the highest level of pushed air and oxygen that he could be on before needing to be put on a ventilator. The nurses said they were worried that he had a blood infection, and that is why he was so lethargic. He was then transferred to the ICU (he was in intermediate care before). I went into the bathroom and cried. I couldn't help it. I'm usually able to hold myself together but when I stepped into that bathroom it all came out without me being able to hold it in. I was running off of about 1 hour of sleep from the night before, and extremely poor sleep for the week prior with Mason being so sick. I cried for a few minutes and then left the little meltdown in the bathroom, came out, and followed Jett down to the ICU.
Things settled down in the ICU, the only thing he had to have done there was an irrigation of his colon and he slept. At this point, I was truly terrified that Jett might not survive. I tried to get comfortable on a small, hard chair, and I slept for a few minutes. I never fell into a very deep, restful sleep, but I remember waking up and realizing that I had dreamed about Jett as a little boy. I woke up feeling calm and filled with faith that he would be okay.
The test results were negative for a blood infection, so he did not need a transfusion, and because Jett wasn't desatting anymore he was allowed to move back into a room in Intermediate care (but still under ICU status) at 4am. We got settled there and around 5am I fell asleep, in a much more comfortable recliner. And then the surgeons rounded at 6am. Dr. Strauch (Jett's surgeon who did his pull-through) was there and brought with him some optimism. He always looks me in the eyes and says "We are going to take good care of him. He is going to be okay. He will get better." He says it in such a confident, believable way, and it is so comforting to me. His assessment of Jett was good, his stomach was getting smaller and his belly was soft, not hard (hard would be baaaad). The previous night he had put him on Flagyl, an antibiotic for the colon... just in case he did have enterocolitis.
Kevin came and we spent the day talking to nurses, doctors, and anxiously watching Jett's monitors. The days all kind of blur together for me now, but none were as crazy as the first night. I could not believe how quickly Jett had gone down hill. It was such a blessing that he was already in Baltimore, where he needed to be, before he became critical. Otherwise, the situation would have been much worse and I'm positive we would have been transferred by ambulance with sirens, or helicopter. The whole day was guided by the Lord. I took him to the pediatrition... just incase. I ate an extra big lunch... just in case. I suggested enterocolitis...just in case. The doctor transferred us to Baltimore... just in case. Jett was put on Flagyl... just incase. All things that got him the care he needed, exactly when he needed it. It was amazing.
While Jett was in the hospital, he had at least 20 different IV attempts and that doesn't count all the blood draws he had to have! He had an IV in his arms, hands, feet, head, and (gasp) neck. Not cool. I hated every second of IV and blood sticks.
One day, an incident occured that was particularly shocking to me. I realized that even a 3 month old REMEMBERS, and REACTS strongly to negative situations. Jett's vapotherm tube (goes in his nose) had come out, and so had his NG tube (goes up his nose and into his stomach). The nurse went to put the vapotherm back in his nose and as he (male nurse) came close to his face, Jett held his breath, started grunting, crying, and flapping his arms at the tube. The nurse pulled back, let Jett calm down, and then tried again. Same thing happened... held breath, grunted, cried, flapped arms at tube. The nurse pulled back, and let him calm down and tried again. SAME thing happened. Only this time the nurse just dodged Jett's arms and put it in anyways. I was so amazed at how strongly Jett had reacted to the situation. He KNEW something was about to happen that he did not like, and he tried to do something about it. Sad.
This picture was also taken on Day 2. It was so hard because we didn't know what day Jett was on with the virus, and so we didn't know if the worst part was still to come. Luckily, that day and the previous night were the worst, and it was just a slow downhill battle from there. Right after that incident, the nurse tried to put the NG tube back in his nose. He put it down, and Jett started gagging. The nurse kept going, and had it all the way in, but Jett did not stop gagging. In fact, his monitors started alarming because he was not breathing. The nurse quickly pulled it out and it was decided that for the night he did not need his NG tube. Jett did not want to be messed with that night!
Another thing I really didn't like was Respiratory Therapy. It was very necessary, but not cool. The therapist would do deep suctions up is nose and down his throat, and then also just through his mouth and down his throat. You wouldn't believe the junk they would pull out of Jett! It was gross. When Jett started getting a lot of mucus in his mouth and nose and was blowing bubbles with it, I would grab the suction and suck it up just at his lips or at his nostril... man, sometimes I wish I had one of those things at home! They are powerful! It would be useful for Mason's constant runny nose when he is sick, or even mine! I really want one... bummer.
The rest of Jett's hospital stay just felt so long. He was there for 8 days, and I never once left. I did leave the floor two times to buy some food, and I went to a "Family Room" multiple times a day to access some food we had put in the fridge there. Otherwise I was always right next to Jett.
There was also a day that it took an hour and a half to get like 1ml of blood from Jett. Looking back now, I wish after the first 20 minutes I would have had a hissy fit and said ENOUGH! It was so ridiculous. It was also at 4am. at about 5:40am I finally got Jett back to sleep, only to have the surgeons start rounding on him at 6am! Every 20 minutes after that, someone was coming in to listen to his lungs and do their assessment on him, and each time I would get him back to sleep and it would happen all over again. The little guy was SOOO exhausted! Unfortunately the next person that came in the room at 7:30am was the main Doc and I just started laughing, because I wanted to cry (I myself was also very tired!) He inquired as to why I was laughing and I tried to say nevermind, but he persisted and I told him about the 1.5hour blood stick and the constant interruptions and he said he'd come back later and let Jett sleep. He could see that Jett's stats were all okay on the monitors and he was no longer critical (this was about day 6 of his hospital stay).
It was such a relief to be transferred to the Pediatric unit on Day 7. Jett was able to have his oxygen removed that night, he was nursing again, he had no tubes and no IVs, and we also had our own room.
That evening Jett's surgeon stopped by. It was funny, because he said he was kind of there on a social visit, and I thought "Oh? You want to chat it up with me? Weird." but really he was there to talk about Jett, his RSV, his Hirschsprungs, and Jett's next office visit. So by social, he meant "unofficial medical talk." He looked at Jett and said "He looks SO much better than he did those first few days. The first two days were pretty scary, he was really walking a fine line between needing to be intubated. I am so glad he is doing so much better." When you have a doctor say something like that, you realize even more the dire situation you were in. Doctors don't always open up like that, saying it was very scary and they were worried. He also said that we'll never know if Jett would have developed eneterocolitis, but that it was better safe than sorry to give him antibiotics to treat it. When you get sick, your digestive system slows down, which in Jett's case puts him at a higher risk for developing enterocolitis when he is ill.
The next morning, the doctors rounded on Jett at 7am. and when they finally got to the part about being discharged, I had a hard time fighting back tears, I was just so happy that once again, we would really be taking Jett home. You can bet I said a prayer of gratitude. Our ordeal was over and we could be reunited as a family again.
