This morning's appointments

Our day started very early this morning. Cooper didn't sleep great last night, and ended up in bed with me most of the night. Our first appointment with the pulmo was at 8:45 and then we went to register and pre op with anesthesiology. We didn't leave the hospital until 12. Cooper fell right to sleep in the car and then had a very good lunch of chicken and veggies and pears. He is now having a 'shake-shake" and watching Jay-Jay the jet plane. The pulmo was very pleased with Cooper. He thinks he should do well, and wanted to wait and see about keeping Cooper the night after surgery. Everyone in the surgery pre-op told me to come prepared to stay, because we probably would, but we won't know for sure until the morning. I really hope they will keep him. I will be a nervous wreck otherwise. Surgery is scheduled for 11:30, so we are to arrive at 9:30. They will give him a xopenex nebulizer in the morning prior to anesthesia. Hopefully that will help. So, now for a fun and flattering story. The anesthesiologist was so sweet. She came in and talked like we were old friends. Then, when we were finishing up, she said "so what field of medicine are you in?" I laughed and told her I wasn't.  She said she was very impressed and thought I could pass myself off as a physician! I told her, I'm my child's only advocate, I research everything thoroughly before hand and know what is going on. Anyway, I was super flattered. My aunt is on her way and we are going to have a fun time shopping and such this afternoon! Will update ASAP in the morning.

We made it

Well, after a very crazy morning, we finally made it to Fort Worth this evening. What was so crazy about the morning you ask? Well, after hearing that the weather was supposed to be colder than expected, I gave my mom a call to let her know so she could adjust her packing. When she answered I knew she wasn't good. She had come down with a nasty cold in the night. I pretty much freaked out. I didn't know what I was going to do. She was supposed to ride with me and go to the pre-ops ect with us. Then Curtis was meeting us on Friday morning for surgery. I knew that we couldn't risk Cooper getting sick, but I didn't want to admit it. It meant I would have to make the 3 hour drive, 2 night hotel stay, and multiple drs visits by myself. Not my idea of a good time. The worst part for me was going to be staying in a hotel with Cooper by myself, and the morning of surgery with no help. We eventually decided that she shouldn't come. This was the right choice because she has since gotten even sicker. I can't imagine how bad Cooper would feel if he got a cold after getting his tonsils out, and I know I couldn't cope with a virus and a post operative 15 month old. Anyway, after talking to my dear cousin Amy, I calmed down. Of course I got worked up again before leaving, but settled back down on the drive. We got to the hotel, and it really is just perfect. It is an extend-a-stay place, so it has a full size kitchen, which is great since I have to tote around Cooper's food. We went and grabbed dinner for me, and then came back and both ate and had baths and played for a bit. Cooper is now sleeping soundly in his pack-n-play. I am about to dry my hair and go to bed myself. Tomorrow we have an appointment with the pulmonologist bright and early, then we have anesthesiology pre-op. After that, my aunt Sharon is coming over to help out. We will have a fun afternoon and dinner, then she is going to stay the night and help with Cooper before surgery. I am so thankful for that. I will update after appointments tomorrow when I can. This really isn't so bad, it has actually been kind of fun for us. We're just making memories!

 

Surgery rescheduled, again

Sorry I am a little late at posting this, but it has been a busy week. Last Friday, the ENT's office called to let me know the dr was going to be out of town the day we had scheduled Cooper's surgery in April, so we needed to change it. First they suggested moving it to April 10. That is Good Friday, so I said that wouldn't work; then she said well how about the next week, like the 17th. I just felt so bad for Cooper and knew he really shouldn't wait that long. He is doing so much better, but he still has tough times, and frankly, I am just so ready to get this over with. So, I asked if there was any time earlier, and told them that Cooper had been well for a week. She said we could do it on March 27, next Friday. We went with that date. I am really gearing up for it. While Cooper had RSV, he was on steroid breathing treatments. I believe they really helped with the swelling in his throat. He is doing so much better eating now. He has been eating chicken again, and taking his normal amount of formula. We also started him on Zyrtec daily. This has made a huge improvement. While I hate adding another medicine to the list, I know this one is really needed, and he is doing just terrific with it. His stridor has been better at night. I do notice if we play outside though, he usually could use a breathing treatment before bed, just to clear things up. Other than that, it has been a smooth couple of weeks at our house, which is just grand! He hasn't been to ANY dr in 2 weeks, which is sadly the longest all year. This cold season has been VERY rough on him, harder than expected, but I think we are past it now. We have been staying in more, no church, mom's club, bible study. Nothing where he would be in direct contact with other children. It has been hard, but I think it has made all the difference, and we have to keep him healthy until surgery. We've been washing hands often and using lots of disinfectant wipes. He's doing great, so it is all worth it. He will have 2 pre-ops the day before surgery, 1 with the pulmonologist and 1 with anesthesiology. We will have to leave practically in the middle of the night to make the first of the 2 appointments. It is at 8:45, so we will need to leave around 5 to make it with the traffic. Please pray for traveling mercies. Also, I am a little nervous that they will opt not to keep him overnight since he looks so good, but he needs to stay overnight. I need for him to stay overnight. I will be a worried mess otherwise. It is not the tonsillectomy I am concerned about, but rather his response to anesthesia. Last time he did not wake up well, and I would have hated to take him home after that. Anyway, that really is my only concern at this point. I think all will go well. Thanks in advance for the thoughts and prayers in the upcoming week.

If it's not one thing...

...it's another. Cooper has RSV. He will not be having his tonsil and adenoidectomy as planned this week. He has had major mucus for a week or so, but he had seen the pedi and it appeared to be nothing more than allergy and perhaps a little cold. Then on Saturday he was not himself. He had a awful cough and began running fever. The only time he has ever had fever was when he had pneumonia. I alternated giving tylenol and motrin, but his fever never came down. On Sunday morning, it was 102.9, so to the ER we went. That was an awful experience. The dr was a joke. He came in and said he had a virus, before even turning to look at him. He continued to say all the antibiotics in the world would do nothing for a virus, so the fact that he had just completed zithromax meant nothing. I knew this, that was the reason that I was concerned about RSV. I told him right away I was concerned about pneumonia and RSV. He told me that RSV is a virus just like any other virus. It only is an issue if they are a premie or have other health issues. I started to explain he did have a complex history, and he told me, while pointing at him and walking out the door, "he's fine now." That's funny, if he's so fine, how come he's on at least 3 meds a day and having upcoming surgery!? He looked in his throat and then sent in nurses to do the tests. He didn't even listen to his chest. They did a chest xray, cbc, strep, influenza, and RSV test. He waltzed in, told me the xray was clean, handed me a stack of lab reports, told me to take them to the pedi, then waltzed right back out, saying "he just has a virus, feed him popsicles." Being the advocate for my child that I am, I read through all of them and then inquired to the nurses. All of them were clearly with in normal range except for one. RSV antigen: positive, normal results: negative. I asked, "what does this mean?" Of course the nurses could not tell me that it meant he had it. They told me, he was carrying the virus, could spread it to others, and had been exposed. Definition: he has it. They encouraged me to take him to the pedi first thing in the morning and advised that the same dr would be there all day and night if he were to get worse. *Hint hint*, go somewhere else. They monitored him until they could get his temp down some (only 1/2 a degree) and until his respirations slowed, then sent us home. I will be making a big fat complaint to the hospital about the dr. Thankfully the nursing staff was terrific. We saw the pedi first thing today, and he made it clear that he does in fact have RSV. He explained it has to run its course, but we will do all we can to prevent him getting worse. He will continue xopenex breathing treatments and an expectorant to break up all the mucus, and continue tylenol and motrin for the fevers. They will see him back on Thursday. We have rescheduled surgery for April 3, baring that nothing else goes wrong and his lungs are clean. I plan to keep him in until then to avoid catching anything else and further delaying surgery.

ENT appointment: we have a date

The ENT appointment went really well on Thursday. The doctor was a hoot and very good. He took one look in Cooper's mouth and said the tonsils have to go. They will also be taking the adenoids as well. I explained to the doctor Cooper's history with anesthesia and the difficultly he has waking up and breathing on his own. He said that some of the trouble he had in the past could have been due in part to the tonsils. But, he said Dr. Hadeed(the pulmo) likes to keep his kids overnight for monitoring, so we will be staying in patient. I am very thankful for this. Cooper will have a pre-op with the pulmo on March 4, then the surgery itself will be March 5. We do not have a time yet, but we are expecting it will be early afternoon. For now, we just are trying to keep him comfortable and fed. He has been eating better. It seems to go in phases, every other day he eats well. The ENT said hungry is a good motivator, and they eat through the pain and discomfort. So I guess he eats one day, then isn't as hungry and takes a break, then is hungry the next day and eats again and so on and so forth. He is doing about 12oz of formula now and mostly potatoes and applesauce, but he is still having dirty and wet diapers, so I know he is fine. Thanks for all the thoughts and prayers. Don't expect too much from the blog until the surgery is over and he is recovered. I will be doing the 365 project, just late and missing some days, but I won't be doing the menu, at least for now.

An update

Cooper has not been well. The reflux is out of control. He is back on his full dose of Nexium and on breakthrough meds, but it doesn't seem to be getting any better. I don't know what to think. It hasn't been this bad in months. Honestly, I can't remember the last time he struggled like this. It is hard too, because his weight is great, so it is assumed that the reflux is fine. But that hasn't been the case. He has been choking on fluids, gagging and chocking on solids, spitting things out, and coughing like crazy. His throat really hurts. His stridor and raspy breath is like it was as an infant. Yesterday was terrible. He had his normal 6-7am bottle of 6oz. He never asked for breakfast, so I didn't give him anything except some rice cakes. Then around 11, I decided we would do oatmeal for lunch because that is easy to go down. He gagged and winced with each bite. It was so sad. After that, I fixed him a 6oz bottle. He got excited as usually when I shook it up and handed it to him. He tried to take a drink, but he literally couldn't. He couldn't do it; he just handed me the bottle back and went to play. It broke my heart. Then a little later, I tried it again. I thought I would rock him and get him ready for a nap. When I tried to give him his bottle, he pushed it away and covered his mouth. I tried it several more times throughout the day, and he would suck it, but let all the milk run out. He couldn't seem to get it down. The worse part was he always wanted it at first. He had a little chicken and applesauce for dinner, but I had to stop him once he started gagging and acting like he might vomit. So, he went to bed yesterday having only 6oz of formula; he usually has 18-24. Then this morning, he woke at 6, we gave him a 3oz bottle and he "dream fed" it all, then fell back asleep propted on my arm. He doesn't usually go back to sleep, so that was a little out of the ordinary. I hear him reflux, then I hear it again, and up comes the whole bottle, all over me and the bed. He choked and cried. The milk wasn't even warm; he threw it up pretty much instantly. After we changed the bed, he fell back asleep and slept for a little over an hour. I took him into the pedi first thing. His tonsils were huge. They were literally touching each other. He has no sign of infection or a virus. He does not act sick, he just doesn't feel well, if that makes any sense. The pedi said, "it is a mechanical issue, they need to come out." We set up an appointment with a local ENT. After about an hour of thinking it over, I realized he would have to be put to sleep to have his tonsils out. He does not do well with anesthesia. I spoke with the ENT's office and gave them a brief history. They said it would not be advisable for us to use them, so we will be going to the Children's hospital where his GI and pulmo are. I called the pulmo to ask their opinion about an ENT. The nurse gave me a name and agreed we absolutely needed to be there, not here. She said that the pulmo would likely want the tonsils out before doing anything else. She acted as if this is a pretty typical occurrence for kiddos with a story like Coop's. She gave me the name, and told me if I had any trouble getting in quickly, to call back and she would make the call. She also told me to tell them that Dr Hadeed thought he needed to be seen asap. She said that if/when he has surgery, Dr Hadeed would admit him and watch him overnight. This was a huge relief. I called the ENT's office and told them what had been going on. They gave me a March 9 appointment. I can't imagine waiting that long; he is miserable. I told her that he wasn't eating, and that Dr Hadeed's office said it was important he be seen soon and that the nurse said she would be happy to call. I told them how little he ate the past to days. After sitting on hold for several minutes, she came back with a February 19 appointment. That is Thursday. We just got back on Sunday night, but it is so good to get in quickly. They said if he needed surgery, we would meet with a surgery coordinator that day and get a date set up. I am ok with this. I feel that if he will need to get them out, let's do it now, so he doesn't have to suffer. I say, don't put off the inevidable. He had 6oz of Elecare today and about 8oz of applesauce, probably about 6oz of juice. Clearly not a good day of eating. Only one more day until the appointment.