Whew! Lots to tell! The bottom line is that Julian is home now, which is unexpected as we had originally planned on staying overnight. However, they were unable to complete all of the procedures they had planned on, and so didn’t need to keep Julian overnight for observation. Of the procedures they were going to do - circumcision, cystoscopy, ablation of valves, closure of vasicostomy - they were only able to do the first two of those today.
They circumcised him, (he was under general and local anesthetic) and did the cytoscopy – a scope of the bladder. From this they were able to determine that his urethra was still way too small to be able to proceed to steps three and four just yet. So, Dr. Koyle made the decision to put them on hold to be safe so as not to possibly damage his urethra further or cause a possible secondary Kidney situation again for now. He said the vasicostomy should hold up for now, and we can try the procedure again in a year or two if his urethra grows along with him. It’s just too narrow right now. The new info we have from this procedure, however, is that he for sure has an intact passageway from the end of his penis to his bladder. We weren’t 100% sure on that before but we know now, and that is great news.
That is the short version of our day today, for the long and much more descriptive version, read on! =)
Our day actually started last night because I wanted to get another ounce or two or milk in little guy with his sodium citrate medication so that he’d be “topped off” for the next 8-12 hours. I finished feeding him around midnight. We were supposed to get up at 4:00 am and leave the house by 4:45 in order to check in at the hospital at 6:00 am for his 7:30 am surgery. In addition to setting two alarms, I asked God to wake me up at the appropriate time. I woke up at 3:59 am. I think He loves to show me time and time again that He is faithful, because not only did He wake me at 3:59, but he also woke me in the middle of the night to finish feeding little guy and when I checked the alarms at that time (around midnight) I realized that I had turned them OFF! I reset them at that time, but God still saw fit to wake me a minute earlier. I just smile and shake my head when He does that. Right on time, He is, every time.
On a side note, I have a friend named Crystal Humble who was the cook at Ravencrest for the time that I was ministering there…she said that one day she decided to take God at his word that he would provide for all her needs, and so she stopped using the alarm clock entirely. She asked God every night to wake her up at the appropriate time in the morning, and she was never disappointed! So, I got a taste of that this morning.
We got up and finished packing and Little Man stayed in his swing and watched us…wondering, I’m sure, what in tarnation we were all doing up at this time. I’m sure he was confused, because I wasn’t feeding him and it was dark out and he was tired and groggy and probably just wanted to go back to bed…and that was just my husband! I’m sure Julian felt that way too. Hee hee.
I could give him water, which I did, until 5:00 am. We ended up leaving around 5:05, which is typical of us. That’s why we usually give a buffer of about 15 minutes, it means we’ll only be 5 minutes late from when we absolutely HAVE to leave. We arrived at the check-in desk at 6:03 am. Success!
They took us into the waiting playroom for surgery patients, and we changed Julian into a miniature pair of scrub pants and scrub top gown that ties in the back. They gave us little sockies also, but Julian had those on for a record 10 seconds before kicking his feet and rubbing them together so as to get his socks off. He was so good natured! Then we went back to the waiting/playroom and waited along with two other children and their parents, for Julian to be called. We had prayed for the procedure the night before, and we know that many of you were praying, so we were not nervous in a bad way. We were just a little tense with anticipation. We felt well covered in prayer. So, Julian, who was now probably very hungry at this point, never complained. I could learn a lot from him. He was tired and hungry but was waiting patiently on Dave’s knee for whatever was next. He is so trusting. It’s like he figured that if we were supposed to sit there and wait, he would do it. Not one cry, no fidgeting, he is amazo-baby. I’m serious; I think if we ever have another baby we will be in shock if he/she has a different temperament than Julian. He has been the EASIEST baby I have ever known. Well, aside from the medical situations which keep us on edge sometimes. Maybe that’s God’s way of not giving us more than we can handle…you know?
They called us and we went into an examination room. So far we had seen two people…the nice check-in lady who took to calling Julian “Cheeks” for the rest of the morning whenever she saw him, (SO cute!) and then the nurse who would later attend him in the final recovery room, who showed us to the exam room, and asked us what Julian was having done today. Then a C.N.A. came in and took Julian’s vitals, and asked more questions including “So what are you having done today?” Then a nurse came in and took some more vitals, and got his medical history “Got some time?” I felt like asking…but we gave her the shortened version. She also asked “So what are you having done today?” Then a Nurse Practitioner came in, listened to his lungs, asked us more questions, including “So what are you having done today?” By this time I was beginning to worry that they weren’t exactly sure WHAT he was having done today and Dave and I were the only ones that knew! “Maybe you want to write this down in his chart for the surgeon?” I wanted to ask at one point. The Anesthesiologist then came in and asked us more questions, and let us know she had received the list of the drugs that are contraindicated with folic acid. (Julian’s “red blood cell folic acid” is 600, which apparently is still way off the charts, so I asked a dear family friend of ours, who is a very talented Anesthesiologist at Mass General, if I needed to be concerned. He told me just to supply the list to them, noting the barbituate class specifically, and not to worry beyond that.) Then she asked us if we knew what Julian was having done today. I don’t know if my face betrayed me or not, but she said “We actually know what he’s having done, but we like to ask the parents so that we know they understand exactly what is being done also.” WHEW! A Big, fat, juicy WHEW! I must have looked relieved. Then the surgeon, Dr. Koyle, came in and explained to us exactly what he was going to do. He called it “blasting” the valve, which at some point involves a laser and cauterization. They were going to open up the valve that way, then tie off the vasicostomy, irritate the skin around the opening and crazy glue the skin together to heal. Then they’d keep him overnight and take pictures of his bladder in the morning to make sure it was voiding properly before discharging us. Oh, and they were going to circumcise him. The Nurse Practitioner actually advised us in the ICC that it was best to wait if Urology was going to do surgery on him anyway, to have them do the circumcision also. Hey, if a world renowned Pediatric Urologist is available to circumcise my boy, I’ll let him! The resident who came in after Dr. Koyle said he’s done thousands of them, and that “he could do them in his sleep.” We asked if we could request that he be awake while performing the procedure, and he laughed. The resident said he basically handed Dr. Koyle the tools, and I also asked if he was the “closer”, as he was the one that had us sign the consent paperwork…so he closed the deal so to speak. We are not without humor, even in difficult situations! Which basically shows that we were at ease and felt comfortable leaving Julian in their hands.
We waited a few more minutes, and they came and got him. We kissed him goodbye, and off he went. This is the first time he has been separated physically from both of us at the same time EVER since we brought him home, and it would seem that he took it better than we did – still smiling as he was carried away. The nurse walked him down the hall, and of course I had to walk through the “restricted” doors which were still open and watch her do that…she went in another set of doors with a few nurses on the other side and I heard a very loud chorus of “oooh! aaaah” when they saw him. I knew he had managed to wrap them around his finger on sight, and I didn’t have to worry at all!
We went out to the surgical waiting area which was had walked by many many times over the course of the 6 weeks that Julian was initially in the hospital, and decided to go get some breakfast in the dining room. We left and were back within 15 minutes. The procedure took about an hour, and Dr. Koyle came out to explain to us that he had good news and not-so-good news, with the good news being we could go home today. With Julian. The bad news was that his urethra was so tiny that they were unable to do the ablation of the valves and closure of the vasicostomy. He explained to us why, and we were satisfied that this was the best course of action for now. As Julian recovered and Dr. Koyle checked in on us periodically over the next 2 hours, I though of more questions for him. He answered them all.
I am a “give me the worst-case-scenario” junkie, so of course I asked that question of what if his urethra doesn’t grow and he can never void out his penis? He explained to me that there are many children in that situation and that in a few years there may even be different technology so he didn’t want to paint himself into a corner. However, he explained what they would do TODAY if he were several years older and still unable to have the reconstruction surgery. It involved attaching the bladder to the appendix and running something through the abdomen with the end result of voiding through his belly-button. I was trying to absorb all that as he said it, so I didn’t ask about the details of whether or not there is a cap on the tube so he can go at will, or is it a bag system with continuous drain, etc. etc. Hopefully we’ll never have to find out, but that is worst-case scenario on his bladder. He would still be able to play sports and do everything a child without his medical challenges would be able to do, so if that is “worst-case scenario” and God wills that, then we will take what God gives us. Best case scenario, which of course I would ask you all to pray for, is that in two or three years his urethra will grow sufficiently for them to be able to complete the surgery, and that he will have bladder control and never even experience in his memory not having a normal urethral system. Miracles can happen, as we have seen time and again. Take his creatinine, which none of the Doctors ever thought would be at 1.7! I am still praying it goes to 0.7 which is normal, as a continuing testimony to the Doctors and to anyone who knows our story.
Yesterday, I took Julian to the hospital so they could take pictures of his bladder, and I stopped in to see Dr. Hall, who runs the NICU at Children’s (Dr. Hall was the man who made the decisions regarding Julian’s care while Julian was in the NICU last fall). He wasn’t in the unit at the time but he was in the hospital, and Brenda the receptionist wanted to page him. I didn’t want to bother him but Brenda said that she would feel very bad if Dr. Hall couldn’t see Julian. She said that cases like Julian’s are the light at the end of the tunnel for the Doctors, that it is such an encouragement to them and helps them know that what they do matters immensely. So, she paged him. He came a few minutes later, and was pleased to hold Julian. Julian smiled, and put his hands on Dr. Hall’s face. Dr. Hall called Julian the “Miracle” and said to him “There were many things that could have done you in little guy, but here you are.”
They finally called us in to post-op at around 9:30. Julian was so pale and groggy, and the nurse settled me in on a rocking chair to hold him. We were told that he had been very fussy up to that point, but we would never have known it; once we were settled, he fell soundly asleep. Not long after, they moved us into the recovery room next door, where Julian slept and ate and slept some more for about 2 hours while Dave held him. We could see the color come back to his face, and around 11:30 or so, he woke up – and he was back! No more groggy overtones (constricted pupils, limp limbs, etc.), although he wasn’t quite as happy as we’re used to seeing him. We changed him, began the process of collecting his things, and we’re given the green light to leave once we were comfortable with his condition. We left shortly before noon.
Julian slept in the car all the way home. We took a quick stop in Boulder to pick up some lunch, and were home by 1:30. The three of us went back to bed around 2 p.m. and didn’t wake up again until after 5:00. It was glorious! This evening has consisted mainly of keeping Julian feed and hydrated, but he’s been asleep for much of it. When we did our family “time-for-bed” routine, he started to smile again, and while Dave read aloud with Julian in the crib next to him, Julian made plenty of good natured contributions to the conversation. What a doll-baby.
So we’re home now and it’s time for bed. Many thanks to all of you who have been praying for Julian’s surgery. We’re confident that Dr. Koyle made the right decision in waiting, not forcing the procedure. We’re thankful for that, confident that the wisdom behind the decision came from God, on behalf of all of you. Thank you for loving our son.
Stacy