I was a nervous wreck all weekend, waiting for the results of Ian urine test and worrying how Ian would handle the experience and how the boys would deal with it.. We had waited until the Friday before the surgery to tell them about it. We waited for such a long time because we didn’t want them to worry about it. I wanted those couple of days to be as normal as possible. That whole week turned out to be more crazy then we could have imagined but I’ll get to that…
Friday before the surgery I talked with a Child Life Specialist about how I could best prepare Ian for the surgery and help him through that day. I had already downloaded and printed a special book from the Children’s website and Ian and I had gone through the book. We had practiced doing surgery one of our stuffed animals. His favorite part was putting a silicone cupcake paper over her nose to make her go to sleep. He spent a lot of time putting me, the stuffed cat and anyone else who would comply to sleep with it. Luckily she felt that I had done everything I should do to prepare him. She was going to meet us Tuesday morning with more doctor play stuff. and support us in anyway. She was also going to try to push for me to be able to go with him into the operating room and stay until he was asleep. The nurse had already assured me that this would be okay but the CLS seemed to think that it might not be possible. This really made me nervous. I was sure that the best way to keep Ian calm was for me to be with him. But all we could do was wait and see how the morning went.
The Sunday before the surgery we asked friends and family to fast and/or pray specifically for Ian. This gave me so much peace. The Lord had watched over and blessed my little Ian through so much of his life. His birth, (One day I will write what I remember about that), his kidney infection and through all the testing he has gone through. I knew that he would bless him now especially with so many people praying for him.
Monday afternoon we finally go the call from the pediatician saying that his test had come back negative. We were a go for surgery, baring any sudden fevers of course.
Tuesday morning came…early… I was up late Monday night cleaning and making sure that we were as ready as we could be for the next couple of days. We had planned to leave around 6:45 in the morning. My mom arrived right on time but we were not quite ready. We did manage to leave the house before 7 AM. I was a little worried that we wouldn’t make it there by 8. Ian stayed awake the whole ride into Seattle. I don’t know if he was nervous or not. He was very quiet.
We arrived at 7:35. We had 25 minutes to kill. We decided to hang out in the car and play a little before going in.
Ian didn’t want his picture taken. What a face!
On our way into the hospital on a sunny January morning.
*It is now one year to the date since his surgery. I really wish that I had finished this post last year. I don’t really remember the day quite as well anymore.But I’ll do my best.
We checked in and got all or our necessary badges and stickers. Ian’s Brown (is small square security blanket) even got a sticker identical to Ian’s bracelet. That way, if it got separated from Ian they would know where to take it.
Waiting to go back to pre-op room.
We didn’t wait very long before we were called back to the prep-room. There Ian changed out of his street clothes into a hospital gown.They had told me all along that I would be able to go back into the operating room until he fell a asleep. The first time I had heard otherwise was when the Child Life Specialist called the other day. When the anesthesiologist assistant came in to talk to us we asked him about it. He didn’t think so but he said he would check. He later confirmed that I could NOT go back with him, the room was already set up with the robots and know non-medical persons could enter. I think my heart just sank into my stomach. Ian is so attached to me and so far he has handled all of his procedures better when I was with him. How was he (and I) going to make it through this? The anesthesiologist understood our concerns. Their solution was to give him a liquid sedative. Unfortunately he hated the taste of it and didn’t really get any in his mouth. The doctor assured me that this would be enough to make him sleepy. It wasn’t! He was wide awake. Their last solution was to have Tom hold him then hand him to me for a hug and then I would hand him to the Assistant. The theory being that he would think that I had handed him back to his dad. We did it and I guess it worked. I don’t know if Ian knew that it was not his dad but he hung on to him and let him carry him away from me and to the operating room. That was one of the most scary moments of my life. (I am crying now as I write this a year later.) It doesn’t matter that I knew that this was necessary, that I knew that we had placed him in the hands of most capable surgeons in the Northwest for this kind of surgery. There were too many questions unanswered about what they would find and what the outcome would be. Even under the most perfect conditions things could go wrong.
Tom and I remained in the pre-op room for a few minutes, tears running down our faces, trying to regain our composure as we headed out to the waiting area.
We were told the surgery would last about 3 hrs but could be as long as 5. We were given a pager. They would page us if they needed us for anything and to give us an update about half way through the surgery.
We sat for a little while in the waiting area reading and playing with the ipad. After a little while we decided to get something to eat. While sitting in the cafeteria the pager went off. I looked around wondering whose pager it was. Tom right away knew it was us and immediately got nervous. We tentatively headed back to the surgery waiting area. The woman at the desk said that a nurse wanted to update us on the progress of the surgery. We waited until the phone there at the desk rang. I answered it with apprehension. A kind voice on the other ends told us that everything was going well! They were about 1/2 of the way done and would be finished early! A wave a relief came over me along with a fresh set of tears. We were so happy that things were going well. It made the next 1 1/2 go a long quicker. While we were waiting I over heard someone say something about the free wifi (how did we not know this?) so we hooked up and watched some Downton Abbey. That helped the time go by much faster.
When the pager rang again Tom jumped and the butterflies returned. We again went to the desk and were told that the surgery was over and the doctor would be out shortly to talk to us and then we would be escorted back to Ian’s room where we would wait until he was brought there after he had woken.
Dr. Lendvey was very pleased with how the surgery went. He said he learned a lot from the scope portion of the surgery and that the re-implantation went as planned. So what did they learn? Ian has a gigantic bladder. (We had already kind of figured this out. He can hold it 4-EVER!) Also the ureter that runs from his bladder to his right kidney is slightly larger than normal but the left side is very large. He could almost get the scope all the way into his kidney. This told him, and us, two very important things. One is that the malformation was due to not forming correctly during utero. Second, the reflux on the left side NEVER would have fixed itself, therefore surgery was the only way to repair the problem. This was such a relief to me. I had been so worried that we were unnecessarily doing this surgery and putting him at risk for complications.
After our chat with Dr. Lendvey we waited for a few minutes before being escorted to Ian’s room. Originally we had been told that Ian would spend at least two nights there in the hospital. However, the doctor said that he would look into this because kids that have much more invasive surgeries then this one go home after just one night. Also, since his surgery was so early in the morning there was a possibility we could take Ian home the next day. His room was pretty big. A hospital bed for him and a pull out couch for his caretaker (me). There was a sink in the room but no bathroom😦 fun story coming about that one🙂
We waited in the room for a while until a nurse came in and said that Ian was in the recovery room and calling for his mom. She said she would take me back there so that I could be with him. They had originally told us that we could not go to recovery unless there was a problem. On the way to recovery she said that Ian had woken up a little upset and was obviously in pain but didn’t seem to be able/want to communicate with them and just kept calling for me.
What a sight he was. You can only understand the emotions that went through my heart if you have had a young child go through surgery. I can not even explain the feelings. He looked so small, so fragile, so helpless. Having seen my oldest in the NICU hooked up to monitors, having tubes coming out of him and his little wrist taped to a board, having seen Ian hooked to machines in the Hospital almost 2 years ago did not prepare me for seeing him this way. As I walked up to his bed side I could tell that he was in pain and could hear him calling for me. I gently put my arm around his head and held his little hand. As soon has I did this his body relaxed and he fell deeper into sleep. With me there it seemed that he would allow his body to stop fighting the morphine and allow it to work. I just sat/stood I’m really too short to sit and hold him like that so it was sort of a kneeling position.
The anesthesiologist came in to check on him after a while and told me a cute little story about him. She said that he was so sweet and quietly laid on the table. When they got the mask, that would deliver the medication to put him under, ready to put on him, he grabbed it, put it on his face then covered it with his little brown blanket and closed his eyes. She said he was so sweet and brave.
After some time in the recovery room, I have absolutely no idea how long I was there and I don’t remember what the criteria was for him to be moved to his room, they rolled his bed down to his room. The urology section of the hospital was filled so he was in a different area. The plus to this was that he pretty much had a nurse dedicated to him. He did pretty well after coming to his room. The only issue he had when he was fully awake is that he was upset that his tummy didn’t feel right when he touched it. No amount of explaining to him was helping. Finally Tom took a picture and showed him. I was afraid he would get upset (typically he wants band aids covering every little scratch and then he covers the band aids with clothes so that he is not reminded that he has an owie) but seeing his wounds really helped him calm down. Here is what he looked like:
Taken Jan 15th 1:39 pm less than 2 hrs after surgery.
Now that he was calm he could enjoy the best part of being in the hospital: unlimited access to popsicles.
2:10 pm on Jan 15th
Once Ian was settled Tom went home to spend time with the other boys.
While he was gone we had a little bit of a setback. I decided to hold off on giving his pain meds because he was doing so well. This unfortunately put him into a downward pain cycle that was hard to get out of. I didn’t realized that he should be medicated on a schedule regardless of whether or not he seemed to need it. From then on we kept him on a tight schedule for his pain meds. We were hopeful that this would allow him to get off the morphine. He needed to be off the morphine in order to go home.
He was pretty tired but doing really well (6:10 pm)
By evening Ian was doing pretty well so Tom decided to bring the brothers in for a visit.
After the brothers left we had a fun playing with the camera on the iPad.
He was so tired but it took him a while before he would let himself fall asleep.
Okay, now for the story about the bathroom. At about 2 or 3 in the morning I needed to use the restroom. The bathroom in the wing where his room was said “patients” only. Not wanting to break the rules I exited the wing and used the restroom. Then I went back to the entrance to the wing pushed the button, turned and showed my badge to the camera, following all of the instructions that I had been given earlier and doing it exactly as I had several times before that moment. But this time nothing happened. I waited. Then did it again. Again, nothing happened. I stood out there for what felt like 20 minutes, but I am sure that it was only 10, repeating the process. I was really beginning to panic. I had no idea how I was going to get it. I can not even tell you how relieved I was when the door finally opened. I used the patient bathroom until late in the morning.
Ian was feeling pretty good in the morning and really enjoyed eating while he watched TV. He never gets to do that at home.
Through out the morning different doctors came by to see him. One prescribed the medicine that he would need for pain once he went home. I was really hoping that would be today. I had been in contact with Tom and he would be coming in soon. My mother-in-law would be watching Eric so that we could focus on Ian. Finally around noon Dr. Lendvey came in to see him. He said that everything looked good but he was concerned that Ian didn’t act like he felt good. He was worried that Ian was not handling his pain well. I told him that I thought that he felt fine he was just being shy. He agreed to let us go later in the afternoon as long as he seemed happy and not in pain. Ian cheered up once the doctor was gone and did really well until Tom made it to the hospital. Tom gave him a big hug and squeezed just a little too hard. No harm done he was fine in a couple of minutes. I saw the Dr. a little while later in the hall and told him about the incident but that he was okay now.
Alas around 2:30 we had completed all the paperwork and checks. They let us go. On the way home we called my parents to let them know that we might not make it home in time to meet Nate and Bryce after school and asked if they would be willing to pick them up. Then I called my mother-in-law who was watching Eric to tell her that my parents would take care of getting the boys. She said that was great because Eric had been throwing up for the last hour or so. What? Yikes! How can I be taking my little boy who just had surgery on his abdomen home to this?……..
Well, the outcome to this twist of events is a whole different post. I will only say that I called the surgeon and he kind of laughed (nice huh?). He said short of getting a hotel room there wasn’t really much we could do. Lots of had washing and get lots of fluids if he does get sick.
I have to give a shout out to my great Visiting Teachers. Let me explain what a visiting teacher is for those who don’t know. In the LDS church we have a program called visiting teachers. In this program 2 women are assigned to be partners and then they are assigned a short list of other women to visit, usually 3-4. Visiting teachers (VT) are asked to visit (in person, phone call, email or snail mail) the women on their list every month. They are to look after their well being and have a discussion about gospel related topics. My fantastic visiting teachers, Christi and Susan, brought Ian a bucket of things to help keep him busy during his recovery. It had a stuffed animal, treats, books and other fun things. Ian felt so special and he loved all the things in it. They had even overheard him asking for a particular book at the school book fair and got it for him. I was such a wonderful gift for him and me. Through them I was touched by how much my Heavenly Father loves Ian and our family. He sent two fantastic women to look after us and make sure we felt loved. They also both brought us dinner the two days following his homecoming as did another friend. Thanks!
Many thanks to all who fasted, prayed and sent us good vibes. I assure you that they were felt and appreciated!