Todd and I were nervous about the pain it would put Evelyn in. But we were most nervous about what it may do to Evelyn. Anytime anyone goes through any surgery, there is a chance of something going wrong. We love Evelyn, we love who she is, we didn't want her to change, have a different personality, to not be as happy as she is.
We were also nervous about her being intubated. Her chances of having trouble being extubated (having the breathing tube taken out) were very high. But we knew that the surgery had to be done. Evelyn's head was growing and she was showing signs of increased pressure on her brain. The consequences of not doing something could be severe brain damage or even death.
After finding out that Evelyn needed surgery, our lives, and emotions, were in a whirlwind. In some ways it was good that it was the Christmas Season for it gave us something else to keep our minds on, but in other ways it was not helpful at all. During a time that is spent celebrating and spending time with people, I just wanted to be left alone and not do anything. There was so much I needed or could have done, but I just went through life in a trance. I felt incredibly guilty for I would have been totally okay with canceling Christmas, yet I knew that I only have so many precious Christmases with young children in my home. I felt guilty not being the best for and with the boys. Though they were incredibly understanding and kind, I knew that I could do better.
Emotionally I was all over the place. The shower was a good place for me to cry (you should try it, no mess and no one to ask you what was wrong). Other times I felt this incredible sadness or doomsday feeling come over me. I wanted to spend every second possible soaking up my beautiful princess. I didn't want to do the dishes, cook a meal, take the kids to karate, I just wanted to hold and talk to Evelyn. Other times I felt emotionless. Sometimes I would have someone tell me that they were praying that Evelyn's surgery would go well, and though I prayed for the same thing, I almost felt as if someone were telling me that they hoped it didn't rain the next day. I hope that I didn't come across unfeeling or ungrateful. Honestly I think it's more that I had felt so many emotions that I was just dry. I felt so many deep and heavy emotions that there were moments I needed to just not feel anything. Well, now that I got some therapy out, I'll continue with our story.
We left the house Wednesday morning at 6:45 AM for a supposedly 8 AM start. We got to the hospital and tried mastering the layout as we made our way to the Radiology department.
This hospital system is a lot different than the normal local hospital. There is a reason it is called an "Empire" for it is a massive compound. There are about 10-12 buildings that are connected together by tunnels and sky walks. Trying to figure out where you are, let alone where you are going, can prove to be difficult.
We got to the Radiology department, which was in the basement, and checked in. We were the only ones in the entire waiting room and were left to watch infomercials on "Insanity" and the "Magic Bullet".
After 20 minutes, we were called back. A tall woman, I shall call Delores, took us back and told us we were at the wrong place. She said that Evelyn would get the MRI after the surgery to determine if the shunt placement was correct. We informed her that we were told that Evelyn would get the MRI before the surgery to determine which surgery was going to take place. Delores stepped out for a moment to get things cleared up.
Delores came back telling us that we were correct, but because the hospital was not on "full functioning" mode, that there was only one anesthesiology team, that Evelyn was going to go upstairs to the surgery department to be put under, then brought down to the MRI.
Delores escorted us through the basement back hallways and up to the surgery check-in. During our travel Delores told us that normally there are tons of patients and tons of medical professionals, but that today was a day off for most people. She informed us that the entire MRI department was supposed to be closed for the day, but that there were 2 special little girls that needed it done that day. She commented that Evelyn must be a really special little lady, which we agreed.
We got to the surgery check-in and were taken back to the surgery waiting area. While there we got Evelyn changed into her hospital gown and awaited in our little room for what was about to happen next. All of the staff seemed to be a little confused on the order of things to occur, but I felt confident that Dr. R would be on top of things.
At a quarter to 8, Dr. R came into the room. Now I refer to Evelyn's doctors without using their full names for I feel that they deserve some privacy, plus they may not always like what is written about them. But I will let you know who Dr. R is because she deserves some serious recognition. Dr. R is none other than Dr. Violette Recinos.
Dr. R started to talk to us about the plan of the day. She mentioned that she was just downstairs going over Evelyn's previous MRI with the radiologist. I was very impressed that she had already spent some time that morning looking over Evelyn's case. Then Dr. R said that after reading all she could find on M-CM she saw that there didn't seem to be anything pointed out as being the cause of obstructing the fluid flow, but rather it just seemed to occur. I was now beyond impressed. In the short time since we had met her the previous Thursday, which time included 2 weekend days and Christmas Eve and Christmas, Dr. R had done so much research and reading on such a rare case. It made me feel very comforted to know that we had chosen such a concerned and hard working doctor.
Dr. R told us that because of all that she read combined with looking at Evelyn's MRI that the possibility that doing an ETV would be the solution was low, but that she still felt that we needed to get the MRI just to be sure.
Dr. R left and a little while later Delores came back in to escort us downstairs to the Radiology department. Turned out that they were thinking that they would sedate Evelyn down there. We were taken into a patient room and waited for whatever else was going to occur.
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| Todd's warning Evee about what is about to happen |
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| Can you tell? They have a special relationship |
After waiting some time, the Pediatric Anesthesiologist, Dr. A, came in. First thing she said when she came into the room was, "Oh, someone is here for hydrocephalus treatment". I'm starting to become more aware of how large Evee's head may appear to other people.
Dr. A immediately showed concern about Evelyn's breathing - actually this whole time everyone was showing concerns about her breathing, when we told people that this was her normal, baseline breathing people were quite shocked. Dr. A then said that she wanted to have another Pediatric Anesthesiologist come in for a second opinion and to assist in the intubation and sedation.
Dr. V, the other pediatric anesthesiologist, came in to inspect Evelyn. She too emphasized that the chance of Evelyn getting extubated (the tube being taken out when the surgery and sedation are done) after surgery was low. There was a huge chance that she would have to take some time to be extubated, possibly be on the ventilator for a day or two.
Dr. A and Dr. V were in and out several times. They apologized for the whole process taking so long, but that they wanted to be extra cautious with Evelyn. I whole-heartily agreed with them. I would rather them take their time to make sure that Evelyn was getting the best care and outcome.
Because a patients stomach needs to be empty when being sedated, I had gotten up at 3:30 that morning to give Evelyn her last feed before the 8 AM start. As we were still sitting there at 11 AM, Evelyn was starving and fussy. But true to Evelyn's style, whenever anyone would come into the room to talk to us, she would stop her "complaining" and happily listen to the person, even communicating back with the person with a smile or blowing a raspberry.
Finally Dr. A and Dr. V came in together. They wanted to intubate and sedate Evelyn up in the OR. They said that even though the room down at the MRI had all the equipment, it didn't have it as well staffed nor set up as they do in the OR. I handed Evelyn over to Dr. V's arms and said our good-byes and good lucks to Evee. It was weird to say good-bye like that, but I don't know how else I imagined it. I just did not expect to see a doctor walk down the hallway with Evelyn in her arms.
Todd and I went up to the surgery waiting area, picked up a pager that would give us updates, and waited. While we were anxiously waiting, I got a message from a missed call. I listened to the message and became very worried when I found that it was from Dr. P, Evee's oncologist.
Evee has an increased risk for childhood cancer, but I still haven't been too concerned. We have been doing her recommended screenings and felt that all would be okay. But when Dr. P had left a message my heart dropped. This would be way too much for me to handle at the moment. Choose one, Brain Surgery or Cancer, but I couldn't take both.
I asked Todd to call Dr. P back, I just couldn't do it. Todd walked away from me while he made the call. After a little bit, Todd came back to me and told me that Dr. P was just calling to let us know the results of Evelyn's recent ultrasound showed that she is still clear of any tumors. Good thing for I may have just quit then and there.
About an hour later Dr. R had us paged. We met with her and she told us that the MRI confirmed that the EVT would not be possible, but that we would have to do the VP shunt. I trusted Dr. R, and felt confident in her decision.
Todd and I went and had lunch/breakfast in the cafeteria. We were trying to keep our minds off of what was occurring, but it was hard. It was tough to think that somewhere, in the hospital, behind some doors that I have never seen, our little baby girl was without us. I had to remember the comfort I had had when I received confirmation that this was the right step for us to take. I knew that I had followed the Lord's promptings, that I had done what I needed to do, from here on it was in the Lord's hands.
Of course Todd and I were terrified of the prospect of something going wrong during the surgery. But we were also very nervous that the surgery would change who Evelyn is. She is such a joy, so pleasant, so willing to smile, so social. We couldn't bare the idea that she would be different than that.
The surgery took about 2 hours - I think, time seemed to not move. Our pager went off telling us to go to the Surgery desk. There we had a phone call from the surgeon.
Todd took the call. I was thinking it would be a quick, "Well, she's done!" , but when Todd was on the phone for a lot longer, I started getting nervous. I continued to get more nervous as Todd listened and nodded his head to show that he understood what was being said without realizing that the nod could not be heard nor seen by the person on the line.
After what seemed like forever, Todd hung up the phone. He informed me of what he had learned from the phone call. Evee's scar was a little longer than expected for they had nicked an artery and had to work with that. There was also a veinous lake present (I have no clue what that means), but the surgery was a success. Also, Evee was extubated!!!!! and we could meet her up in her room in the PICU! I wanted to run, jump, and shout out of excitement. My desire to get to Evee's room was enormous. I wasn't sure we could get there fast enough. I was annoyed with the fact that I had to wait for Todd to go to the restroom (why couldn't he had done that earlier), and that we had to go to the 3rd floor first to get security badges.
I was so relieved to finally make it to Evee's room. I walked down the hallway, past nurses and doctors and directly to my little girl. Todd had been told that Evee was up and looking around (very typical of her). When we came in, Evee was slightly awake, but still seemed very unaware. She had a roll around her head and quite frankly, did not look too good.
She had the surgical marks still on her head, she had bandages on her incisions, and iodine stains all over her head. Her face looked different. Her forehead was not as prominent for the rest of her face was swollen.
I leaned over and tried to kiss her as gently as possible. When I inhaled it made me sick to my stomach. I had smelled that same bloody, sweaty, iodine smell before. When William had had his accident he had smelled that way for weeks, at least to me. Even now if he gets overly sweaty I will smell that smell on him. It is a disturbing smell for me and brings up many emotions.
Because of the intubation, Evee's cry sounded different and weak. It hurt my heart to hear her cry. She wasn't allowed to eat anything for the first 6 hours because they were nervous about her throat being swollen. This made me so sad, especially when I considered that she hadn't eaten anything since 3:30 that morning. Drops of sugar water had to suffice as a substitute as I pumped the milk I desperately wanted to soothe her with into bottles for later.
That first day we sat with Evee and just stayed close to her. She would wake up for a bit, and sometimes acknowledge us, but never smiled. That evening she started getting more fussy and inconsolable. Mary, Evee's nurse, told us that the doctor had prescribed her some morphine if needed, so we had Evee get a dose of that. The morphine made Evee very sleepy and "out of it", but by how I have seen her react with pain, I knew that she had to be in a lot of pain. Plus she needed the extra rest to help recover.
Todd's parents were staying the night with our boys so Todd was able to spend the night with us. Evee was in a room by herself, that had openable windowed walls to the adjacent rooms. There was a curtain that we could pull to give us a little more privacy, but when it was the middle of the night, any light from anywhere seemed to be blaring into the room. If the extra light was the only complaint I had, that would be fine, but it was a long, hard night.
First off, the only area for sleeping was behind Evee's bed on a window seat/bench. This bench was about 8 feet long and 20 inches wide. Todd and I "slept" feet to feet. But even that wasn't the worst part of the night.
Evee woke up several times in the night. She was uncomfortable and in pain. I wanted nothing more than to pick her up and comfort her, but I couldn't. She couldn't be moved. I decided to somewhat lie down next to her and feed her with a bottle as I stroked the parts of her face I could touch while I let her feel me close to her. She is such an amazing girl and did not deserve to have to go through all this. LONG NIGHT.
Dr. R (the NeuroSurg) came in around 7:30 AM Thursday morning to check on Evee. She had come in twelve hours earlier as she was getting off of work and was again coming to check on her before work. I was impressed with how devoted Dr. R seemed to make sure everything was going well with Evelyn.
Dr. R was happy about Evee's progress and recovery and was optimistic that she would be discharged the next morning.
Evee gave us her first smile post-op. Todd and I were thrilled to see it. Not only because she is so cute when she smiles, but it indicated to us that she was okay, her brain was okay.
That afternoon I was setting up to pump when Mary, the nurse, came in and informed me that I could nurse Evee if I wanted. I couldn't believe it. I could pick up Miss Evee!
Very cautiously I lifted Evelyn's little body from her bed and caressed her in my arms. It felt so good, it felt natural, it felt right. Once I held Evee, she smiled a huge smile. She missed it too. Things were going good and we were going home in the morning.
Only problem was that Evee's heart rate was registering as being very fluctuating. Her heart rate would be go from 240 (very high, dangerously high) to 150 bpm in a matter of seconds. When the nurse was getting all worked up about it, I assumed that it was just a monitor malfunction, but when Mary told me that by listening to Evee's heart rate, she knew that the monitor was accurate.
The Cardiologist came in to inspect. She ordered an echo and an EKG. She also decided to put Evee on a beta-blocker (heart medicine) to help regulate her heart rate.
Well, Evee just bought herself more time in the hospital. I think she was avoiding the boys, wanting to get more rest. Her heart rate did stabilize, but then she had to be monitored while first taking it.
That evening Todd went home to be with the boys, so I was left at the hospital with Evee by myself. Staying at the hospital with your baby can be very lonely and very weird. The hustle and bustle of the hospital dies down around 4 PM, then the hospital gets really quiet around 8 PM. During the day the hallways on the main floors remind me of an airport, but in the evening it is very quiet and surreal. I didn't want to go to bed early, though I was extremely tired, and by the lights of the other rooms, I am thinking that the other parents felt the same as I did.
I always have mixed feelings while having an hospital stay. I will walk the halls (or even just sitting in the room) and be sad that we have something that is keeping us at the hospital, that there is something wrong with my daughters health. At the same time I will ponder about the other patients in the hospital and feel that I am incredibly blessed for things could be so much worse for Evee. Sometimes I even question why we are at the hospital, that Evelyn's condition is not too life-threatening, then there are times when I'm at home and I question why she is not in a hospital. Definitely get your emotions and feelings going all over the place.
When the cardiologist came to see me the next morning (Friday), she told me that she was unsure that it was the medication that caused Evee's heart rate to regulate. She pointed out that Evee's heart rate when to normal way too quickly, that the medicine doesn't react that quickly. She wanted to take Evee off of the medication, but that was going to cause us to stay longer for then she needed to be monitored for a day of two while going off of this medication.
I had gotten an email from another mother with an M-CM child. She told me that her daughter had atrial ectopic tachycardia (AET) and that it is common for M-CM kids to have that. I told the cardiologist about my email and when I mentioned the AET, the cardiologist looked at me and said, "Yes, that is what Evelyn has". Oh, I didn't realize that. Then she left.
An hour or two later the cardiologist came back. She changed her mind with taking Evee off of the medicine. She said that if AET is common in Evee's syndrome, then she felt that Evee needed to stay on the medicine while they figured things out.
Staying on the medicine meant less time that we had to stay in the hospital, but it also meant that I have to administer Evee heart medicine every 8 hours. (Evee will sleep 10-11 hours at night). This medicine, which Todd drove into my mind, cannot be missed, it would be very dangerous to miss it.
That afternoon Evee got moved from the ICU to the regular floor. Yay. I was excited. The area she was moved to had less room and almost no privacy, but it did mean that we were one step closer to being discharged.
While on the regular floor, Evee wasn't quite as closely monitored, which I guess is the point. She also got more heart echos done. Evee watched the tech doing the echo and stared at her intently and smiling in between. The tech kept commenting on how easy Evee was making her job at the moment. The good news was that the tech never left the room, so I am guessing everything looked good, or at least acceptable.
Todd was with me for most of the day Friday, then went home in the evening to be with the boys. Again I was left on my own with Evee in the hospital.
I missed the boys. I facetime'd them every night, and all they seemed to want to see was Evee. Todd told me that though they missed Evee, they needed me. He said they were feeling the effects of not having me around.
Dr. R came and visited Evelyn around 7:30 PM. Essentially she had visited Evee every 12 hours her entire stay. I could not believe that Dr. R was still at the hospital. She looked like she had been running around all day, yet she was so kind to come and check on Evee instead of just hearing what the nurse had to say.
Dr. R was pleased with Evee's recovery and said that she could be discharged in the morning. I was happy and relieved. I do not like staying at the hospital, but for the first time, I wasn't pushing to go home this time. True, at times while at the hospital I would wonder if Evee really needed to be there, but then less than a week later I would be home, with Evelyn in my arms, wondering why she wasn't in the hospital. This time Evee was in the hospital I wasn't pushing for a discharge at all, I was keeping my anxiety back for I wanted to make sure we all felt comfortable with the thought of her going home.
- Side note- now that some time has passed, Evee's doctors are becoming more honest about what their thoughts of Evelyn use to be when they first saw her. They have mentioned that they were incredibly nervous about Evee's breathing. I seriously think back to how terrible it was and sounded and laugh to myself about what had to be going through these doctor's minds. It is not normal and it had to be so odd to see a patient like that not in the hospital. I am grateful for Dr. A, the ENT, for having Evelyn admitted into the hospital using the guise that he wanted her reflux checked and it would happen easier and quicker in the hospital. He probably just wanted her monitored in the hospital without causing too much alarm to me. He was right about her reflux and getting control of that has improved her breathing a lot.
That night Evee was having some pain. All she was on was Tylenol every 6 hours. She still had 2 more hours before she could have her next dose of Tylenol.
I paged the nurse asking if there was anything she could take. I didn't want morphine, but something to help take the edge off for her. The nurse was able to give her Oxycodon.
While she was administering the medicine, the nurse realized that Evee didn't have an IV in. When she was first in the ICU, Evee had two IVs in, one in each hand. As we were leaving the NICU, having noticed that Evee likes her hands, Mary had taken out one of the IVs. I'm not sure when the other one was taken out.
The nurse left for a moment and came back informing me that Evee had to have an IV in and ready in case of an emergency. Here we were, the last night, going to be discharged in the morning, and Evee had to get an IV put in. I understood it, but I didn't like it.
Evee didn't like it either. Two nurses came in to put the IV in. The head nurse inspected where they were going to be placing the IV. Evee's appendages were all a little scarred and hashed. She still had the scars in her hands from the other ones.
The nurse decided to put the IV in Evee's right hand. The nurse had a hard time getting a vein to pop, and when she got the needle inserted into the skin, she had a difficult time trying to prick the vein.
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| Evee was NOT impressed |
Evee was amazing, and funny. When she was feeling pain (and this seriously took forever), Evee would squish up her face. It was so cute. After going through a couple of needles, Evee started to get fussy about the whole thing. I pulled out my phone and took pictures, to which she cheered up a little bit. Finally they had gotten an IV in. It made me sad that they had to put an IV in, especially for just one night.
Saturday I woke up, excited for the discharge. I just had to wait for the doctor's discharge.
Dr. R was not working (good for her), so I had to wait for the on-call NeuroSurg. Finally around 11 he came and Evee was free to go (once the paperwork got filled out). Todd had to work and I had no car at the hospital. Fortunately my dear friend was able to come and give me a lift. She even stayed at my house for a bit with my kids so I could go upstairs and take a shower. Don't tell anyone, but I hadn't showered during the entire hospital stay. The only option was a communal bathroom and I didn't want to risk getting something there. So, Dry Shampoo was my friend.
I am thrilled about how Evee's surgery went. The valve on the shunt is quite protruding, and her scar is quite long, but overall Evee looks and is doing so good. She is smiling, she is friendly, she is social, she is herself! You can only imagine how thrilled the boys were with her homecoming. She got bombarded. We all were so happy to have her back home with us.
Thank you to everyone for your prayers. I know they helped. Evee's surgery was very successful, even more than we anticipated. Thank you for your prayers and love.
