I didn’t sleep at all the night before the surgery. I was way to nervous and kept on watching Wilhelmina sleep. I got up at about 4:30 and took a shower and got the last things together. Just before leaving we woke Willa up, got her dressed and brought her into the car were she promptly fell asleep again. I didn’t want to be late so I drove faster than I usually do and luckily I did because with the traffic we got the hospital just in time.
We headed to the registration and then to the 7th floor where had the pre-op the day before and we got her undressed and put the gown on her.
At about 7:25 we headed up to the tenth floor and waited for the team to come talk to us… First her doctor and a resident, then the anesthesiologist and then nurse who would be taking her into the OR. At 7:55 it was time to hand her over.
She was playing and in and out of Simon’s arms but when it was time and she realized that they were taking her away from us she started to cry.
It was one of those not breathing cries that took an eternity to come again and it only came out after they had turned the corner and we could no longer see her, just hear her. It broke both of our hearts and we felt so bare.
Simon and I headed down to the seventh floor again and told the nurse that we would be going out for breakfast and that they could get us on the cell phone. I didn’t think that I could head out like that but the idea of a meal before a long stay sounded good. After eating, we headed back to the hospital to wait. It is eerie how slow time can pass.
We had been told to expect her out by about 12-12:30 as there was another surgery scheduled for 1pm in the OR, the time came and went without news. We couldn’t do anything but wait and worry.
At around 3pm, I headed down the hall to the ask for news and ran into her doctor who was just coming to talk to us… it had been 7 hours since she went in and though he was done she was not out yet and there was still the things to be done.
He explained that the obstructed (malformed) segment was a lot longer then he would have thought (5 cm long)and he had to cut out much more than he thought he would have to. That made the remaining ureter too short, so he had to lift the bladder up and attach it to the muscle higher up so that so that it would fit. He also had to taper the ureter which was still 5cm in diameter, so that it could be reimplanted into the bladder and to make things harder, if all of that was not enough, the infection left scar tissue and damage all over.
Finally at around 4:30pm, nearly 9 hours after we had let her go, she was out of the OR and was in the recovery room and we were finally able to see her. I was told that I could nurse her so I nursed her by leaning over the bed and I saw that she needed to be held but the nurse was hesitant because of all of the tubes and especially the epidural she had, but my mama bear came out and there would be no question that I was going to hold her. The nurse quickly realized that I was not going to back down and called the doctor who said it wasn’t a problem.
It was a maze of tubes. Her Nephrostomy tube was out but she had a ureteral stent coming out of her left side, a catheter and foley coming out of her bladder, a drain that was enclosed in the bandage, an IV, the monitors checking her vitals and or course the epidural. We were able to work it out and I sat in the rocking chair and I held her in my arms comforting her and she fell asleep. When she was deep asleep I was able lay her down and she went into a quiet and deep sleep for a few hours.
Simon brought all my stuff up and then headed home and then my friend Gen arrived to get my keys and brought the car to her house.
When she woke I nursed her again, she watched a few music videos that she likes on the iPod and then the nurse offered a movie for her and she watched Strawberry Shortcake and fell asleep right at the end. Because of the long surgery and the epidural we had to stay in the recovery room for the night so the nurses brought a bed for me and I laid down and fell asleep next to her. At 1 she woke up and I woke with her, nursed her again and then soon after she fell back asleep and so did I.
The next thing I knew, I woke up while the nurse was doing something next to Wilhelmina. She said that the nurses from the floor would be coming to transfer her soon. I asked her what time it was and she said it was 6! I asked if she had slept the whole time and she told me that she had actually been awake for a few hours and was quietly looking around and talking and that they didn’t want to wake me because I was sleeping so well. I can’t believe I slept right through but I guess I needed it.
Soon after, she was transferred to her room.
Because of the catheters and the extensive work on her bladder she had a lot of spasms which were painful even with the epidural which meant that she also had Tylenol around the clock and an anti-spasm medication also. She also had antibiotics. It was so hard to see her like that but she handled it so well.
Of course, because of the epidural, she was mostly confined to the bed. For the next few days, I nursed her by leaning over the bed and I guess she felt that she couldn’t move much so she very quiet for those few days. She watched TV, watched stuff on the ipod, played games on the ipad, slept, played with her babies, and just stayed still.
On Friday, Oct 7th, the epidural was turned off and was then taken out and she started on morphine for the pain. With the epidural out I was able to hold her more but she is happier in the bed still. Strange because she is used to bing on me all of the time. It think that she was so happy that she could move around more and was able to colour and draw. I also thing that she still felt slightly confined with the tubes coming out.
At that point, her catheter and the stent were not draining exactly as they should but the overall output is still fine so there are not much worries on their part though I still had some concerns of my own and wasn’t able to get straight answers from the resident.
During the week I had been offered 5 free tickets for Saturday’s Disney on Ice presentation in a lodge byt the hospital. So on Saturday, the plan was that Simon would come to the hospital and stay with Willa and that I would go to the show with my mom and the boys. About 30 min before they were expected to arrive I went to give Willa a bit of a sponge bath and noticed that her leg was rock hard up to her knee. I presses the red button next to the bed and asked for a nurse to come right away. The nurse arrived and I just said “her IV infiltrated” he looked and said “your right” and promptly turned off the IV, ran to get the supplies and took it out. Her leg was completely swollen right up to her knee and her skin looked so tight that it looked like it could split. I called Simon to tell him that I wouldn’t be going to the show. I wanted to convince the doctor that I could keep her hydrated without the IV by giving her water and nursing her so that she would not need another IV in which meant I needed to stay.
On Friday, one of the residents had asked if she had had a bowel movement and I told him no and that she often went 2-3 days without one. He said it was not normal and ordered a laxative which I refused when it got brought to her Saturday morning. Luckily I did as she had a few loose bowel movements later in the day which of course the nurse took a sample of one to have it tested. She also put a sign up on the bed just in case.
After the show, everyone came back to see us and Simon stayed with Willa for about an hour while I went out to eat a meal with my mom and the boys. It felt so good to see the boys and have a warm meal. Because it was a long weekend and my mom had an appointment on Tuesday, I would not be seeing Simon until the following Wednesday, so I stopped by the grocery store to grab some food for Willa and I. However, Willa is still not eating but is drinking.
Strangely, her bandage keeps on getting soaked and has to be changed often and the foley is still not filling up.
In the evening the night nurse comes, changes her bandage and takes the sign off. We have a semi-rough night. She is awaken a few times, seems to have a bit of pain. Her bandage leaks everywhere and she needs morphine in the night.
Sunday morning her bandage is again soaked through. The nurse changes it and we see that it is leaking from the ureteral stent into the bandage. The bandage is changed and then urology resident comes and tries to fix it without seeing the problem. Another nurse arrives soon after and informs us that she was positive for C-Difficile from the stool sample the day before and puts the sign back up. During the day, I am able to get out for a walk around the hospital with her in the sling and I get some coffee… It was long day with numerous bandage changes and a very active little girl. The Foley finally starts draining again but she pees in her diaper also while the ureteral stent is draining into the bandage.
At around 8:30, I ask if we can have things done before she sleeps (meds, bandage etc). The nurse informs me that they want to change our room before we head to bed. I don’t like change, so I panic a bit, ask why and she explains that it is because of the c-diff. She is called out and then comes back to say that it will be done in the morning.
In the morning, they still want us to change room. However, I have made a friend in the room we are in which makes days go by much more quickly and I don’t want to be in a single room especially because even though Willa has C-diff in her bowels, she is not showing any symptoms and is likely just a carrier. Within an hour, the single room is needed by someone who really needs it and ID (Infectious Disease) gives us the OK to walk around as long as Willa is in the stroller or on my in the sling.Ah… the sling. The sling is amazing and the doctors and nurses are amazed to see how calm she is when she is on me. I even helped a mom on the floor by making a sling with a bed sheet for her son who had open heart surgery.
Her stent in still draining into the bandage which needs to be changes every few hours so the resident comes and tries to fix her stent and change the dressing. The stent starts draining again but only for an hour or so. The resident doesn’t have clear answers about what the stent is doing and it is frustrating. I really am annoyed with the resident. He doesn’t explain, doesn’t listen and has no bedside manner.
On Tuesday, the resident comes in again to check up on the stent and this time sees the hole. We had originally thought that the hole was made where the stitch was holding the tube but then he realized it was the hole that had been made by the doctor. Originally the stent was in the ureter to keep it open and make sure that it drained. It passed through the bladder and out her left side and a hole was made so that it leaked into the bladder and then the rest went through the tube and into a bag. However, it had slipped. He didn’t know how much though. So it was a long day with stent working on and off. There is question about when it will come out. Either Wednesday or Thursday with the Penrose drain coming out the day after and us going home. Willa is doing so much better though she still hasn’t started to eat again. Dr. Jednak comes into see us and I tell him about the issues that I have been having with the resident. He listens, asks for more details and then says that he will talk to him in the morning.
On Wednesday morning the resident comes in with a smile on his face and a completely new attitude. I finally get word that the stent will be coming out on Thursday. The Penrose on Friday. During the day Student nurses are there. They are in there first year and are completely new. Wilhelmina is a bit off and not herself and though I feel bad, I am very protective of her and her rhythm of the day and don’t let them do all of the things they want to do. At about 7pm she falls asleep on me and I feel that she is a bit warm. I lay her down and call the nurse and she gets a temp of 39.2 and the ball starts rolling. Blood culture, chest x-ray, urine culture with an in and out catheter, ultrasound, iv etc.
Because she has awful veins, the iv is hard to put in as usual so PICU is called down to help. They get a line in her foot but say that it might not last for long.
The ultrasound is done by the radiologist himself and he sees the same grade 4 hydronephrosis in her kidney, though it seems a bit worse than before the surgery. I break down… the stress of the stay was getting to me. I am assured by urology that it could be normal swelling, but Willa has been complaining about pain in her side so something so the whole situation is nagging at me.
We finally are able to head to bed at about 12:30am. She sleeps next to me and has fever during the night and is a bit less by morning.
On Thursday morning urology comes and takes out her stent. There is only a few cm left in her so it comes out quickly and easily. It was no longer draining because it was no longer in the right place and it was so close that soon it would have come out by itself. Around lunch Simon comes and brings some General Tso from my favorite place. Wilhelmina has feverish eyes and her fever comes back in full force afterwards. She sleeps most of the afternoon and we have a rough night with a baby in the room crying all night. Also, each time the nurse adds a med to her IV she cries. I ask her to check the IV site and she assures me that it is ok.
When the day nurse arrives on friday morning we see that her IV had once again infiltrated. She can’t get her meds and still has a fever. The Infectious Disease team wants her to have antibiotics as soon as possible. PICU comes down to try an IV but looks at her veins and doesn’t even want to try. They, and the nurse, then convince Urology and ID to have a PICC line inserted once again.
We head down for an ultrasound at around 11:20 and come up in time for Simon to arrive with lunch. Simon stays for about an hour and Willa is not allowed to drink because she will be put under general anesthesia for the PICC line.
The Ultrasound shows that her hydronephrosis has slightly worsened since the one on Wednesday night. Again is could be swelling, but swelling should not be getting worse since it has been 10 days since surgery. We will need an another ultrasound soon.
Willa and I lay down together and relax for a while we wait to be called to go down. We wait in the same room that we waited in back in July when she had her Nephrostomy and PICC put in. The radiologist comes in to talk, then the anesthesiologist comes in and explains what she will do. We then go to the room and I am able to once again hold her while the mask is put on. I leave, go get a coffee and then go to the 10th floor recovery room to wait. Simon meets me there after work and we wait together. Finally she arrives and we go into the recovery room and wait for her to wake up. She wakes after about 5 min and I am able to hold her right away. ID comes and right after they ask if she has had a stool and I say no, she has one. Because she just started on a new very strong antibiotic the day before, I am convinced that the loose stool is because of that.
After an hour we head back down stairs and Simon arrives with Supper soon after. We eat and then Simon heads out to go back home and Wilhelmina falls asleep for the night. The friend that I had made in the room leaves with her daughter and I feel quite alone…
On Saturday morning,we have a quiet morning and I get a text message that Suzi (my mom), Simon and the boys want to come over for a visit.
They arrive after lunch and Simon stays with Willa while I go out walking with my mom and the boys. I write a quick message on the blog, then Facebook while I had internet access at the mall and then head back to the hospital. When I get back, Simon tells me that the nurse came by and was talking about a urine culture with an “in and out”. I tell her that I don’t want that and she says to talk to the doctor from ID. He is at the nurses station so I go talk to him and we argue a bit back and forth about having a urine culture in that way. However, we then realize that we are not arguing about the same thing. He thinks that the alternative I want is a bag (which is what urology suggested) while I am arguing that I am willing to do a “clean catch”. When he figures out that she can do a clean catch he simply says with a smile “then why are we arguing.. if she can do a clean catch then do it!”
So when Simon leaves I do that right away. Willa and I then relax in front of the TV and she falls asleep. While I am falling asleep myself, the nurse tells me that they will be stopping the stronger antibiotic and starting the antibiotic for the c-diff during the night. In the morning the day nurse asks me how she took it during the night and I tell her that I thought it was by IV because she didn’t take anything by mouth during the night. So the night nurse did not actually give it. She said she would bring a dose then but I refused and said I would like to talk to ID about it and also tell her that I will be giving her a probiotic instead.
The urology resident comes in to change her bandage and asks me why I refused the antibiotics. We get into an argument with him resorting to scare tactics and trying to convince me that the benefits outweigh the risks. I tell him I will talk to Infectious Disease since they are the experts and he smirks at me.
My friend Martine comes for a visit and brings the probiotics and right after she arrives ID comes and i tell him about my concerns about the antibiotic. Again there is a slight misunderstanding and he thinks that she has been on the antibiotics since friday but I just decided then that I wanted to stop and is confused when I tell him that her first dose was actually supposed to be during the previous night.
He checks how many stools she has had in the last two days and I tell him that it is becoming a bit more solid. He says that it makes sense that the loose stools were probably caused by the antibiotic and understand that I don’t want to add more antibiotics if there are not symptoms. He says that he will put it in hold and then I ask him about the probiotics and he gives me the go ahead and writes it in her chart. I later find out that he cancelled the med altogether.
Dr Jednak comes and checks up on her even though he was not supposed to be around that day. He says that the plans seem to extend until Friday and he will want a ultrasound on Wednesday to see if her Kidney is getting better or worse. He also mentions the dreaded Nephrostomy word again if the results are not positive. He gives us the OK to take her off the iv between doses and tells me that we can go out if we wish. Freedom!
When Martine leaves for a few minutes the nurse comes to flush Willa’s PICC line and we notice that it is leaking. The nurse calls urology and the decision is made to take it out immediately and put her back on PO antibiotics again. All that for nothing as the urine and blood cultures had come back negative. Of course that means that there is hope that we will be able to head home sooner rather than later. Martine stays longer then she was planning and gets some supper for all of us. Wilhelmina’s appetite is coming back and she enjoys the Pad Thai that Martine had brought me.
On Monday morning Dr Jednak arrives early at around 7am. He tells me that the ultrasound will be scheduled for Tuesday and that we should be able to leave after that. Relief… one more night and I will be in my bed!!
The resident comes soon after to take out the Penrose and for the first time in more than three months by baby no longer has a tube coming out of her.
While doing Willa’s hair that morning I notice a bald spot on the back of Willa’s head and ask the nurse though she doesn’t know what it is. Dr Jednak checks up on us later and I ask him about it and he says it is Alopecia Areata, it is rare but some times happens after a trauma or surgery.
After he leaves, I dress Wilhelmina and we head outside for a long walk in the fresh air and go get supper before heading back to the hospital. It felt so good to be walking outside with my little girl… and she was so happy also..
On Tuesday morning we are told that the Ultrasound should be done in the day. We wait and wait and then realize that they are too busy and we will not be able to got one in before they close. Dr. Jednak come by and tells me that we can go home and just come back the next week. Free at last…
Since my friend who had our car could only come later, another friend offered to go get it and bring it to me so that we could head home more quickly. Thank you, thank you, thank you!! We left at 7pm and finally arrived home at 9pm after two long weeks in the hospital.
It is not done yet, Monday (tomorrow) we have the ultrasound, then I am going back to see the doctor at the end of the week for the results. We still have many tests to do and months of antibiotics but at least we are home again and this part is over…