Frustration. Frustrated. Frustrating. All variations of the same word and I have sounded like a broken record the last few days using all of them. I am FRUSTRATED. We ended up being told we had to run, not walk, to Children's downtown because Brady had renal tubular acidosis, a kidney disease, that needed to be evaluated immediately so treatment could begin. I was terrified, but hopeful at the same time. From the little bit I had managed to google, it seemed it was treatable, as long as it had not gone on untreated for too long. And if it was easily treated, then this was the answer we had so prayed for in regards to Brady's lack of weight gain. Brad said, how great is it, that this is the END OF THE ROAD with Brady's health journey. How amazing would it be to have all of this nightmare end?! As much as I was scared and did not want to be in a hospital, he was right. I could get through this, knowing the end was near. Wednesday was horrible. By the time we were settled in our room it was nearing Brady's bed time. He was already worn down because we got no sleep Tuesday, as he woke up from thunder and would not go back down. They had to do a full work up on Brady and get blood and urine and blood pressure and all that jazz. He was beyond tired and mad that he was being messed with and he screamed and screamed and screamed. It was breaking my heart into pieces. By the time they were done messing with him it was after midnight and he finally passed out at 12:30. Only to be woken up at 4:30 for blood pressure and temp and then we were up. Well, I had never really gone to sleep. I heard nothing but baby screams throughout the night. The chilling sound of being in a children's hospital.
I spent all of Thursday morning knowing nothing. I was, wait for it....FRUSTRATED. Sitting in a hospital room, with no answers. I didn't want to leave the room for anything, afraid I'd miss a doctor. Finally a team of residents and a doctor came in, filling up the entire room. They said it did not appear Brady had RTA. They were still consulting the renal doctors, but it did not appear to be the issue. The original labs were incorrect. They left, and I was frustrated. Why are we here? This is not the end of our journey.
Thankfully we were in a hospital dedicated to children. And Brady was able to attend a special Paws program and see lots of doggies, eat cake, have popcorn and then play on their train exhibit. My dad brought Blake up and the two of them got to play and run around. I stayed sitting in the hospital room, like a trapped prisoner, waiting for a doctor. I needed answers. I could not miss the possibility of finding out what was going on. I had been documenting everything that Brady had been eating and the nurse let me know they were doing an "official" calorie count on Brady and we would be there three days. I almost lost it. I could do a calorie count from home. Why are we in the hospital to count calories? I was FRUSTRATED. We are already aware to give Brady as many calories as possible. This was not an issue we felt we needed to explore. A doctor came by later and let us know Brady's team of doctors were reviewing his entire two year health history and felt they should bring in immunology. They would be by the next day to talk to us. So we settled in for another night at the hospital. Another night of no sleep for me. At least Brady man was able to. I have to say, that one thing I am grateful for is the entire time we were there, Brady did not have to have an i.v. and even got to wear his own pajamas and clothes from home. Small things to be grateful for.
One of the doctors came to talk to me Friday morning and let me know they had definitely ruled out the RTA. Immunology would be by at some point and they were doing the calorie study. I told her I did not agree to be kept at the hospital for the study alone and listed my long list of reasons why. She said she would address my concerns to the attending doctor. One of the immunologists came by shortly after and we discussed Brady's long history, family history and he let me know they wanted to look at the other areas of Brady's immunity that had not been looked at previously. They want to look further into his T cells and not just the B cells. I don't know what all of it means to be honest. They would be collecting more blood though. He let me know he would be by a little later with one of his partners that would be who we would see in their immunology clinic after the blood results came back (about three weeks). She came in a little after and let me know that 1) she didn't think Brady had an IGA immunity defficincy as we had thought since last year. 2) there are lots of other areas of immunity to explore that need to be explored with Brady and allow us to continue to rule out or diagnose. I was very taken back at her thoughts on Brady's IGA not being low. I said then how do you explain his constant illnesses? Again, she said there are other arms of immunity. I was FRUSTRATED. Not only are we here for something that turns out Brady does not have but now you're stripping away the only answers I thought I had. The tears started to come to the surface and I tried to fight back. The doctor could sense this and tried to reassure me. "Its a good thing nothing serious has come up, but I know as a momma that goes home with him and worries about him at night, you need answers. And hopefully we are on the path to give that to you." She left and I sobbed. I sobbed for having no answers, for being back at what feels like square one. The nurse walked in on me and asked what was wrong. I told her I was FRUSTRATED. I let her know that I did not want to continue being in the hospital for strictly a calorie study and after Brady had the rest of his blood drawn, we should be able to leave. She said she would talk to the doctor. They drew Brady's blood, but stated one of the things to test for would have to be drawn at a later date because no one was at the hospital on the weekends (apparently their weekend starts on Friday) to process and it had to be processed immediately. Later on in the afternoon the nurse said they called in an emergency worker to process Brady's blood and would have to stick him again to get the last of what they needed. Otherwise, we'd have to return on Monday. I hated that for Brady. But then she said, after they get the blood, you can leave. I almost passed out from sheer excitement. Or exhaustion. Brad showed up with Blake and we got to all play in the game room together and then watched a movie in Brady's room. I think Blake thinks hospitals are all snacks, game rooms and movies and he'll probably start asking to go back. Ha. We eventually got the rest of Brady's blood drawn and were on our way. FREEDOM!!!!!!!!!!!
The thing about kids is they are resilient. Way more than adults. The only sign of Brady's hospital stay are his very bruised arms from constant blood draws. He's not worried. He's not sad. He's just so happy to be running around with his brother again. I wish I could get over the last few days as easy as him. Blake and Brady missed each other like crazy. Blake was constantly asking my dad or Brad where Brady was and he listed all the things to Brad that they do together for fun and that he missed it. Brady spent all of Wednesday evening saying I love Bake. Bake = Blake in Brady talk. They have such a special bond. I hope they don't have to be apart under those circumstances again.
Have I mentioned that I am feeling very frustrated?? I am also angry. BUT I'm trying to focus on some positives and keeping faith that things happen for a reason. There is a master plan to unfold and I don't know the answers now, but one day, hopefully sooner than later, I will have peace and comfort. Answers. And I know, being together, holding on to those I love, will get me through until that day comes.
A few pictures from our stay...
The view from our room. Not pretty. At least our view included the helicopter pad which Brady thought was cool to see the helicopter in flight. And also served as a reminder to me things could always be so much worse.
Not a good picture of Brady, but if you look at his eyes, they look black and blue. It shows how TIRED this poor guy was from no sleep in the hospital. Heart wrenching.
And a few of my other little man who I missed so much while we were in the hospital. Wednesday night my parents kept Blake and Thursday my dad took Blake to work with him! First time ever at the office. I got this picture texted to me from my dad. Totally put a smile on my face. I guess he finds the transportation business rather dull. 
And Blake snuggled up in the hospital bed. Silly boy.
1 comment:
I'm so sorry to hear about Brady's health. Reading your post makes ME frustrated; I can't even imagine what you must be going through. You, Brady, and your family are in our prayers.
Post a Comment