We met with the anesthesiologist, the GI specialist and the pulmonoligist to go over what all was going to be done. They let me go into the procedure room with Kate (what a great surprise), while Daddy-O stayed in the waiting room. Kate did so good and wasn't even anxious until she saw all of the equipment. They let me sit and hold her on the stretcher while they gave her gas. It was plenty strong enough, as the nurse and I had to turn our heads. She fought it for a few seconds, which seemed like a really long time, and then started getting sleepy. I kissed her forehead, told her I loved her and laid her on the stretcher. Daddy-O and I raced down stairs to get a bite to eat and made it back upstairs just in time for the GI doctor, who was first on deck, to be coming out.
By this time we were the only ones in the waiting room, a great improvement from the day surgery center, where there are people everywhere. Dr. V explained that he didn't see anything anatomically wrong with her digestive system. Everything was in it's place and there wasn't visible signs of inflammation. He said this is typical considering the dosing and length of time she has been on Prevacid. He took somewhere around 6 biopsies from her stomach, intestine and esophagus. Biopsies of the tissue will show how much covered up damage is really there. We should have the results from those and the pH probe at our follow up next Wednesday.
In between the doctors, a lab tech drew a bunch of blood for the immunologist, so that a) we didn't have to stick her while she was awake and b) we would have results for it all before our appointment in two weeks. That's a think ahead type of plan and I LIKE IT!!!! They were even able to get the blood from her IV (which they put in on the first try) so she didn't have to have another stick.
By the time we finished talking with him, Dr. H, the pulmonologist was done with his procedures. He explained that he too, found nothing wrong with her anatomy. Her airway was definitely inflamed and had a lot of mucous in it, but nothing he didn't expect with the upper respiratory virus she has right now. He explained that they took a washing of her lungs, where they wash the inside of her lung with saline and then pull it all back out and test the saline for different things. They also did a brushing of her lung, where they insert a small brush to collect some of the cells from the lung. They also did a brushing of her nose.
Dr. H had mentioned these tests at her last appointment, but didn't feel like they were necessary. I figured since she was going to be out they may as well take care of ALL of the what ifs and save us having to go through this again. I pushed with his nurse and he agreed to do it. The fellow that was with Dr. H walked the brushing specimens straight to the lab as soon as they had them. They looked at the samples to see if they had a good sample of her cilia. Cilia are the hair like structures in your ears, nose, throat and lungs that beat in specific rhythms to knock out germs, allergens, etc. At first look, there was no movement. They then realized they had collected them in the wrong solution. They did another brushing of each.
While they were taking the other sample to the lab, Dr. H explained that he still felt that she was one of those kids who just gets sick easy and gets wheezy with simple viruses. He said we would know more at the follow up in the next week or two, when all of the biopsies were back. About three minutes later, he and the fellow returned with different news. The new brushed cells that the fellow took to the lab where not the cells that they expected to see. I'll try to explain as best as I understand and if anyone knows better, feel free to correct me.
The lining of your lungs has a layer of water that houses your cilia. Outside of that layer is a layer of mucous. Germs, allergens, etc. enter your airway and get trapped in the mucous around your lungs. Then the cilia beat in rhythm to push out the mucous containing the germs, etc. preventing them from entering your lungs. The cilia can be damaged. This is what Kate's looked like. There are two ways that we discussed that this can happen.
#1 There are genetic problems that can cause the cilia not to function properly. This would lead to them being permanently damaged and unable to beat off germs effectively, allowing the patient to get sick very easily.
#2 The cilia can be damaged by a virus or infection. After the infection subsides, the cilia repair and become functional again. If they don't have time to repair before the next illness, they are just re-injured and don't beat off the germs they should. It is kind of like if you have a cut on your finger. The cells in the cut look different than your skin because they are damaged. The cut is trying to heal itself back to the "skin" stage, but every time you bump it or stretch it, you re-injure it.
Kate's cilia or the cells that were there instead, are definitely in the injured stage. The doctor made the comment that the cells were not what they should be and were damaged by the constant chest infections. I think I actually said, "AHA, so I'm not crazy!!" out loud. :) The question is which scenario is the cause. Both are very likely, both make a lot of sense. There is a blood test that can be done to see if it is genetic. The test, however, isn't always accurate. If it shows that it is genetic, then we will have an answer. If it shows negative, it doesn't necessarily mean that it isn't genetic, as it has a 25-40% accuracy rate with false negatives. The only way to tell if it is constant infections that is causing the damage is to do another brushing when she is "well". As the doctor said, since she is not ever "well" for long enough for them to repair, it might be a while before we get to that point. If the cilia were present and properly functioning when she is well, we would know that they are capable of repairing and functioning. I am not sure what the treatment for either situation involves or if there even is treatment for it. We will know a lot more once we get all of the biopsies back and go in for the follow up appointment. We will go ahead and draw labs for the genetic testing at her next appointment. This way if it is genetic (which with my allergy, asthma, ENT issues it very likely is) we will know for sure that it is. I figure if nothing else it keeps the pediatrician, Dr. McP, from stepping on toes again. You KNOW he would be ordering it the same day he saw the report.
During the second meeting with Dr. H, the GI doctor was placing Kate's pH probe. Shortly after, we were called back to recovery. I was pleased to see we were in a private room instead of the huge, open, "hi I'm your recovery neighbor. don't mind me puking on you" recovery room we were in last time. The nurses all LOVED Kate and continued to show her extra attention. She had a little trouble staying warm and keeping her oxygen saturation up. She is a lot like her momma and doesn't like to wake up after anesthesia. I will take that over the nausea, vomiting scene any day of the week. She did NOT want to open her eyes, but was coherent enough to nod and shake her head appropriately when we asked questions. "Do you want a drink?" got a big yes and "Are you ready to get up?" got a big no!
Eventually, she popped her eyes open, asked about her sissy and was ready to roll. She had some juice and sat there talking and carrying on like nothing ever happened. She checked her ankle to make sure no one had stolen her ID bracelet. She barely even noticed that she had both arms in splints, connected to one another across her shoulders, and a tube stuck in her nose. The nurse recommend that she keep the arm splints on until we take the probe out tomorrow. After explaining to Kate once that if she pulled on the tape or the tube, she would have a boo boo, she left it alone. She hasn't messed with it since, other than to point and tell me when she has a "boober".
She did great on the ride home, staying awake, singing and dancing to her video, but insisted on having a baggie so that she could pretend to throw up. She heard that was what it was for and she was not going to miss out. Strange kid! When we got home, she followed me over to the neighbor's house to pick up Leah's stuff. You seriously couldn't tell the poor kid had just been through all of the probes and poking she had. She is SUCH a trooper. She immediately wanted to eat when we got home and did just that.
She ate 2 Popsicles, goldfish crackers, 6 Ritz crackers, some juice and much to my dismay, 2 glasses of chocolate milk. She wanted a third Popsicle, but I cut her off. I put her down for a nap with the restraints on. I figure it is not worth repeating the probe if she pulls it out in her sleep. I know that if I tried to keep those things on the full 24 hours (think crucifix position) she would come undone. I have to be right with her every second she's awake anyway to make sure she doesn't get tangled up and to record every burp, hiccup, sneeze, cough, cry, time she lays down, squats, stands up, drinks or eats, so I figure it's safe enough to leave them off while she's awake. As soon as she woke up from nap, she asked for hot cocoa and some crackers.
The tube she has goes down her throat into the lower part of her esophagus. It measures how often acid hits it and what level of acidity it is. It is connected to a computer that I have to hit buttons on every time she engages in one of the above activities. I also have to keep a written log of it all that coordinates with the time on the box. It is seriously, far worse than hitting the button in the hatch every 108 minutes on LOST. Much, much worse. Have you ever tried to notice, let alone record, every time a very active 21 month old bends over, lays down, burps, etc. while trying to chase no more than 18 inches after her so the tube doesn't get pulled out? Wheh! The device came with a single strap to wear over her shoulder, but it is way too long and just gets in the way. I put the device in a little back pack for her to wear and it is perfect. It keeps the tube out of her arm's way and makes it where I'm not having to chase her with her "leash".Tonight she's been a little more fussy. I can't say I blame her. Some of it is from the anesthesia, some from the Morphine wearing off. Some of it is because they pumped her so full of air....and chocolate milk. She has been through SO much in 21 months and quite a lot of it this week. She is such an amazing little girl and tolerates things so very well. I think I would be incredibly cranky just having that silly tape on my face, even without the tube down my throat. She's spiked a fever tonight and is having a lot of trouble with wheezing. Both are to be expected with as much irritation as her airway got today. I put her to bed in our bed and came in to check on her a few minutes later, only to find the tube wrapped around her neck, fairly tightly. She was okay, but it scared me pretty bad. Daddy-O had the idea to run the tube down through her splint so now when she flops around she just ties up her torso. Needless to say, she will be bunking with us tonight. I'm sure we will all be exhausted tomorrow. Kate and I will head back in tomorrow to have the tube removed. They said I could do it myself, but since I have to make the trip in to return the equipment, I figure I let them have the honors. If it would have saved me the drive, I probably would have done it!
So the game plan is to follow up with GI next week. I think this is important since we know her lungs have issues, but are not sure on the GI stuff. By the time we make it to the pulmonoligist, at the end of the week, we will know whether or not to rule out reflux. After we follow up with him, we will see the immunologist to get her lab results and then finish out with our pediatrician to make a final plan. It is so nice to have a little piece of the puzzle here and there. I am excited to watch it all come together and get my baby well!
Thank you God for a smooth day today, for watching over us all and for answers. Thank you for the best doctors and nurses, for answers and guidance. Thank you for friends and family that would take time out of their busy schedules to lift us up in prayer!
Amen
1 comment:
Just so you know...I KNEW you werent crazy too. :) Glad there is progress being made.
Stacey
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