Well, what a weekend this has been! I've been meaning to get this up all weekend but just haven't had/taken the time.
We got up around 4:00a on Friday morning to get ready for the hospital. We were out of the house by 5:00a and at the hospital by 5:15a. We got checked in and were taken to our little curtain area of the ASU (Ambulatory Surgery Unit). The nurse started taking JD's vitals and getting us ready for Pre-Op. We were in the ASU until about 6:20a or so and they moved us to Pre-Op. They said that JD was a "Top Priority Patient" so he was at the head of all the patients. JD was so quiet and just taking it in. He isn't used to being woke up at 5:00a by any means and was definitely NOT about to get used to it.
In Pre-Op we constantly had nurses and doctors in and out asking questions, etc. The anesthesiologist (Josh Schwartz - you FL people will get the significance of that name) came in and explained the risks of anesthesia. Then the nurse came in and asked a bunch of health history questions. We then met the anesthesia nurse, and spoke with the ENT specialist/surgeon. They came and gave JD a medicine to help with the sedation process. That medicine made my child SO drunk! It was hillarious! People kept walking past us and laughing at JD. It was so funny. The anesthesiologist's assistant then had us sign consent and then wrapped a warm blanket around JD and carried him down the hall to the OR. Miah and I were then told to head back to the ASU waiting room and we would be paged when the surgery was over. It was hard watching JD be carried away like that, but in a way it was nice because we didn't have to see him being hooked up to all the monitors, IVs, etc.
It was 7:30a when they took JD back to the OR and we were told the surgery would last between 1-1 1/2 hours. Miah and I joined hands and walked back to the ASU waiting room. It was the longest 70 minutes if my life. We went to the cafeteria for breakfast just to try and pass the time and then went back to the waiting room again. When that pager went off we walked to the desk and were directed to the Consult Room. After a few minutes the surgeon came in and gave us his report of the surgery. He said that everything went perfectly and he was thrilled with the result. He said he was able to remove the majority of the contents of the two masses on the left side of JD's neck and the one in the back of his throat. He made an incision on the right side to look at that mass but it was too deep for him to get any results. The surgeon had to place a drain in each of the masses on the left side. He finished his report and we were directed back to the waiting room.
A few minutes after going back to the waiting room the pager went off again. This time we were taken by a nurse to the PACU (Post Anesthesia Care Unit) to see JD. PACU was on the other side of the hospital so it took several minutes to get there from the ASU. I had tried to prepare myself for just how bad JD was going to look. When we walked into his curtain ("Room" 15) of the PACU a nurse was holding him. They said he had JUST fallen asleep. As soon as he heard our voices he jerked awake and started screaming. He sounded horrible with all the "gunk" in his throat. He immediately started grasping for us. I held him first. He looked awful and was SO upset. He just kept screaming. When I saw what his neck looked like I just started crying. It was SO much worse than anything that I had pictured or imagined. Then it started getting to me. I had only had 3 hours of sleep, pretty much no food, and a LOT of nerves. It all combined to make me totally unprepared for what I saw. JD was reaching for Daddy and after I handed JD to Miah I began getting very flushed, my head started spinning and I got so lightheaded. I've never felt so close to passing out and it couldn't have hit at a worse time. I didn't pass out though :) I may have felt like I was going to but I didn't. I've never had a weak stomach for that kind of thing but this time it was MY BABY.
After a few minutes I pulled myself together and walked to the cafeteria to get a drink. I then went to the ASU waiting room to get Miah's parents who were waiting to see JD. His parents, aunt, and uncle were waiting for us. I got to them and started tearing up...again! We started walking toward the PACU and I tried to prep them for what they were about to see. Only two people were allowed in JD's "room" at a time so we took turns going back to see him. After everybody had a turn with him Miah and I went back with him again and held him until PACU finished getting his room arranged. Around 10:00a or so the nurses wheeled us to our room in the Children's Hospital ward. JD was finally calming down and resting a bit. We got in our room and got settled. Within two hours we had three different doctors and two nurses who were in and out asking questions, hooking up IVs, etc.
Dr. Puhr from the Pediatric Unit at the hospital came by to check him out. She asked several routine questions then asked about JD's breathing. I told her it had been fine. She said, "Well, i'm asking because they told you about his throat, right?" I told her I didn't know what she was talking about. She said that the mass in his throat was a lot larger than they had originally thought. Between that and the three masses on his neck she said the swelling was constricting his airway. (It's a good thing that they told me this AFTER the surgery or I would have been even more nervous.) I had no idea! The "what ifs" started flooding my mind! I was so thankful that the two masses on the left of his neck had been as obvious as they had, otherwise they may not have done the CT Scan and found the mass in his throat.
The Infectious Disease doctors came to examine JD and ask a bunch of questions. They said that JD has NOTHING that is contagious and it may take quite a bit of time for them to go away completely. It will take 2-6 weeks before the cultures come back and then the results have to be sent to the lab for Sensitivity tests. Each mycobacteria can only be treated with certain meds. If we treat the infection with the wrong meds it will build up a resistance and make it harder to treat. It was a lot of info to process in a short amount of time - especially when dealing with JD after surgery. He was so miserable feeling but did awesome.
We had a phenomenal nurse -- she actually goes to our church which made it even nicer. Anything we needed - she took care of. She was great with JD and really made a difficult situation a bit easier.
JD had a few visitors - Aunt Cheyenne, Uncle Jay, Jack and Cody, Mrs. Sarah, Mrs. Hangosky, and Mrs. Tiffany - and he enjoyed the company too! He slept most of the afternoon and was quite lively all night. He did fabulous with eating/drinking too. He was only allowed to have fluids and he drank over 40 oz of apple juice in about 10-12 hours, 6 oz of beef broth, and 4 oz of chicken broth. The nurses said most kids don't eat quite that much in the first day or so - but JD isn't most kids! ;) He ended his day with an orange slushie and some ice cream. (No, he's not at all spoiled!)
Friday night didn't provide Miah and I with much sleep. We were both sleeping in hospital chairs and slept horribly. JD seemed to sleep alright. On Saturday morning JD was wide awake by 7:00a. We had several doctors and nurses come and check JD out again before discharge. Then around 9:00a our pediatrician came by to see JD. He wasn't on call or working but wanted to check on JD. When he got there JD was wanting to take a ride in a toy car that he had been playing with from the hospital. (They had a whole room full of toys for children who were staying in the childrens' ward. It was awesome!) Miah and I had already been pushing JD in the car for quite some time and we were tired of it. Dr. H said "Hey JD - I'll push ya!" and he did. He pushed JD all around the nurses station and then back to our room. Afterwards he asked if we'd seen the ENT doctor yet. He was the one who was supposed to discharge us. When I told him we hadn't he said, "Come on JD. Come with me and we'll go find that doctor." About 20 minutes later he came back with JD and our discharge papers! What doctor does that?? and on his day off???
By 10:30a JD had been given his last dose of hospital antibiotics/pain meds, we were discharged, and on our way home. We stopped at the pharmacy and got his precsriptions then got home around 11:30a. It had been a long 30+ hours but the worst of it was OVER...finally!
JD still has a long way to go. He had an allergic reaction to his pain meds so can't take anything at this point except Motrin. That's been hard on him! We know he's in pain and there's not much we can do about it. :( Yesterday both of his drains fell out - they weren't supposed to be taken out until Tuesday. Never a dull moment...
It's been an eventful few days but our little guy is a trooper. We are exhausted and ready for a calmer weekend. :) We still have concerns and are trying to have faith. GOD is great and we trust that. We have some specifics that we want to request prayers for:
1. Healing for JD
- It's going to be a long process and it will require a lot of patience as we wait for answers, test results, etc. He's in pain and we pray that subsides soon.
2. Refreshment for us
- Miah and I are EXHAUSTED! We both ran on little sleep all weekend and are drained - emotionally and physically
- We are still praying for some needs to be met. This medical situation was quite unexpected and we are praying that GOD will provide.
We can't thank you all enough for the prayers. That is what got us through all of this. Please continue to pray. I know you all have your own lives but please keep us in your thoughts as we wait for answers. We are so grateful for you.
In His Hands,
Jeremiah, Crista, & JD