The ambulance and fire truck arrived. It was quite the scene. I think I shocked a bunch of the guys since I was so calm. Then they saw that I was feeding a baby, walking around, tending to Noah, and keeping a baby happy on the ground. Oh, and I think Leigha was eating. Then they saw all of my equipment and guessed that I knew what I was doing. They took Noah to the hospital and I followed behind. It was a horrible night to say the least. He was admitted. They tested him for RSV, he was negative, and then decided he just had the croup. Sadly, Noe's father died 3 days later so Noe flew out to TX for the week. It was hard trying to be with Noah and the rest of the kids. Thank God for my aunt, uncle, and friends.
My aunt and uncle visited Noah in the hospital and my friends came over, after school, to watch the kids while I ran to be with Noah. After an eleven day stay, they weaned him off of the oxygen and sent him home. I knew that wouldn't last long. He was back on oxygen that night, as his levels wouldn't stay up there. A few days later I packed Noah up in the van and drove him back there. I had no issues driving him, since he was on oxygen and I could hear him breathing the whole way there. That was the one time where I didn't follow my rule, if you hear something bad...just turn up the radio. Once again he was admitted to the hospital. I knew he wasn't better. That was when the word tracheostomy was brought up. What a horrible word. What a horrible thought. Noah was having such a hard time breathing that he was put in the PICU.
An ENT was brought in to do a scope on him to check out his airway. He came out a bit later telling me that it took a little longer than expected because they had a problem getting past the HUMONGOUS cyst that was blocking his airway. The croup made his throat swell and it was already narrow as it was. He found that it was a mucous cyst, and scraped it off. Magically, Noah was home just a few days later!
In Novemeber, he got croup again. This time I just took him to the ER and asked for the steroid shot. They almost didn't let me go home, but they called our pulminologist (I LOVE HIM!) and he assured them that I knew what I was doing. He got better.
In January I started to worry that the cyst had returned. He was breathing at a rapid rate again and I just knew it was back. I took Noah to our pediatrician so that I could skip the ER visit. She called ahead and had him admitted. Nice short cut! I then started hounding the Ped floor to call in our ENT to do a scope again. I knew it was back. Days later, nothing. I got irritated as hell because I kept missing the on call doctor. I finally tracked him down and explained that I thought it was back. He told me that he looked down his nose with the camera and he looked fine. After arguing for 30 minutes, trying to explain that he has ALWAYS looked great down to the vocal foldsd, he said he would call our doctor the next day and have him do the scope. I had to KEEP CALLING! Finally, he came in and said he would do it, but he was pretty sure they wouldn't find anything. I think he was annoyed a bit with how much I was harping on them. He came out and said that he did have a cyst again, but much smaller. He also found that he had narrowing, most likely due to the long intubation during his NICU stay. I had two options, wait and see if it causes problems again OR have him go in and laser/freeze the scar tissue. Hmmm....wait and see if my baby turns blue and I just happen to be there at that moment, or be proactive and have a problem taken care of. Needless to say, I scheduled the surgery.
On March 1, Noah's doctor walked out quite fast and told me that his cyst had not come back and he was now able to place the proper sized breathing tube down his throat! That was great news. He basically had grown out of it!
My next irritation with this doctor has to do with Matthew, so that will be a post in itself.
Fast forward to July. Noah started again with the croup cough. I am so used to dealing with it, that I just call our pulminologist (at anytime I want to...did I tell you that I love this man!?) and basically tell him that I am going to start steroids again and just confirm dosage. For weeks, Noah's respiratory rate is elevated, he has the stridor, etc. He didn't lose his coloring though. I, however, knew that he had a cyst again. I just knew it. After a month of his being in and out of sickness, my old home health care nurse (who overreacts) saw my nurse's report on Noah. She is now the director. As soon as she saw that he was breathing like that, she started calling all of my doctors freaking out. Too bad she didn't contact me first. I had already talked to everyone I needed to. I scheduled an appointment with our ENT once again. Noah is like a freaking car. Wouldn't you know it that he sounded so much better the day I took him in? I explained that he had been having all of the same symptoms for the past month and I was pretty sure that his cyst was back. He just shook his head at me and told me that these types of cysts don't come back. I asked him at what point do I bring him back if the wheezing and congestion don't go away, he said I don't need to. I was irritated. I felt like he thought I was an idiot.
A month later I decided to go back to our pulminologist (you know, the one I love!) This man is available at any time of day or night. He will call you back in about 2 minutes. He has checked out my other boys when I bring them in for one appointment. He even checked me out one time because I was having issues too. He is basically a one-man team. He goes above and beyong with my boys. I finally found a GREAT doctor in Las Vegas! That's why I love him. He agreed that Noah shouldn't have had this stridor for this long. He scheduled a bronchoscopy (and more) for October 10.
He found that he did have a small cyst again and the narrowing was an issue again. My doctor did admit that the cyst SHOULDN'T have come back. Unfortunately, as much as I love him, he can't do anything about that because it's not his area. So that means going back to the ENT. I am now waiting to hear back from the administrator because I have requested to switch to a partner (they are known as the best in the city) because I don't want to go back to our previous doctor. I know he's great, but he just doesn't understand that my kids are going to do everything he is not used to and go against the norm. It's irritating me the process I have to go through. All the boys are sick again, I feel like I am listening to freight trains as they sleep.
Back track now to Matthew. Matthew was taken off his reflux meds in Decemeber and was basically weaned from his oxygen. All I was waiting for was his sleep study. Unfortunately, he got sick right before it so I had to cancel. Then he ended up getting pneumonia and needed more oxygen than when he came home. For the next 4 months he was congested as hell and needed 3 times the oxygen than when he was released from the NICU. I made an appointment with our ENT in April to see if it was possible he had a cyst too (he is the identical to Noah.) My ped. had also asked me to take him in. The doctor made a face and said that would have nothing to do with his oxygen levels. He said he would look down with a camera. He was fine. I kind of hinted to the fact that Noah was fine to the vocal folds too. Sigh. A month later I took him into our pulminologist (getting the hint?) and he said he would scope him to find out what's going on. He found a small cyst. HA! AND something else I wasn't ready for. It seems that he had horrible swelling and irritation from REFLUX! When one baby gets something, they tend to treat them all for it. We kind of figured that Noah and Matthew didn't have reflux, as they weren't throwing up like the exorcist brother Robert. Noah went off meds shortly after coming off the oxygen. Matthew was taken off in December since he was about to have his oxygen discontinued. We got him back on meds and low and behold, he is now off his oxygen!!! Once again, I was right, our ENT was wrong! If he had just done the scope himself, we would have found out about the reflux. UGH! The cyst is still there, but we won't deal with that for awhile, it doesn't seem to be the main issue.
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1 comment:
My gosh, cathy! I want to print this and send it to that dumb Dr. he should see in print how much you all have suffered for him being so stubborn and brushing you off. What a Jerk. So what comes next with the kids?
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