On the second day of the Houston trip, we got up pretty early. We got dressed and packed up, then we went downstairs for the free hotel breakfast. It was pretty good, the best part is they had boiled eggs. Tucker got an egg in a bowl, and he was so excited!
Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid. He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.
Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before. Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?" Well.....that is up for interpretation! It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.
The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.
By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days. So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.
So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer.
So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest. Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic. There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling. I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.
We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them. He licked all of the peanuts and the girls fought over who got to sit next to him. Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in! He was so proud of himself again, so we made a very big deal out of it.
So now it has been two weeks since the Houston visits. Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low. She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.
I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that. So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.
I haven't heard anything back about any of the other lab work, so I think everything must be fine :)
Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.
I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)
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