June 25, 2012 Surgery Day

Surgery Day. We were scheduled to be in pre-anesthesia at 7 am and in the OR at 7:30. They came up to get us at 6:45. At this point, her shunt had been clamped off for about 3.5 hours. The goal was to make her ventricles large enough so that her neurosurgeon could thread the new shunt catheter without problems. The night before had been almost uneventful, then at about 5 am she started to have bradies, followed by tachycardia, followed by desats into the high 60's. Her O2 was at half a liter when she went to bed the night before, and by the time she got to the Surgical Prep area it was on 1.5. No sooner had we gotten downstairs, and she started vomiting. The nurses started asking me tons of questions. "Did she eat after midnight?" "Did she drink?" "How long has she been vomiting." Just then the anesthesiologist on her case came in and saw her vomiting. She asked how long that had been happening, and I said for about an hour. The nurse told her it was probably because of the shunt being clamped. The woman gasped and said "What in the world!!" She looked scared. The anesthesiologist looked nervous and scared. What a way to put mommy's nerves to the very brink. I asked her why she was so worried, and she said that the vomiting could cause all kinds of problems, blood pressure could get bad, and she could aspirate. At this point, I was starting to think the externalize shunt wasn't such a bad thing to deal with. Then her neurosurgeon came in, took a look at her and said- "Let's unclamp this." Which he did, and I saw an immediate change in her. He got all of the paperwork and consent forms for me to sign, and I asked him how long the surgery would be. He said maybe two hours.Hugs and kisses were given, and we went to the waiting room.
8:10 am- I realized I was supposed to check in at the waiting room desk. I went up and talked to the girl an she said Grace was in the OR, and the doctor would call when he was done.

9am- I was starting to get very nervous. I went upstairs to get coffee (which I didn't drink) and Josiah a cinnamon roll (which he did eat). I came back up and immediately asked for news, but there was nothing yet.

10:15am- The 2 hours had passed and I was about as anxious as I get. I kept reminding myself that it takes a few minutes to get her under, then they had to intubate her. But, I know her doctor, and I know when he gives a time he figures all that in. He also highballs his guess, so as not to make the parents too scared. I was scared. Very scared. I started to cry. I tried so hard not to, I didn't want to scare the other parents in the room, or Josiah, but I couldn't help it. I just had to cry. I begged God on my babies behalf. I had no idea what was going on in that room, why it was taking so much longer than planned, but I knew He did.

11am- Still no word from the surgeons. I got a text asking for news from one of my dearest friends. I told her we had no idea what was going on yet. She sent me back-" I know you know this, but she is in God's hands. He is guiding the surgeons right now. She is not alone in there. Jesus is by her side & right by your side too." Did I know that? Of course I did. Is it really easy to lose sight of that truth when you're scared out of your mind? Oh yes. Thank God for the reminder. I was suddenly taken back to the day in CT waiting room, July 6, 2010, as she was seizing uncontrollably. Our Pastor sat with me and read Psalm 27 to me. I didn't even need to open the Bible right then,  I could hear Pastor read every verse to me. That was one of the worst days of my life, but from it comes one of my sweetest memories.

11:26am- The girl at the desk called "Parents of Grace Richards?" I almost killed people to get up and to the phone she was directing me to. I got in there and the nurse was on the phone. Dr. Silberstein wanted me to know everything was OK, just taking much longer than he had anticipated. She had been stable the whole time, but she was proving to be very tricky to thread the catheter into her atrial vein. I was able to breathe again. At least I knew she was doing ok in there!

1pm- Dr. Silberstein came in. He LOOKED exhausted. He told me she had done well and that the other docs were closing her up. He said that when he went into the neck this is what he expected to find:

Instead, he found this:

Hahaha...should we have been surprised? This is Grace we're talking about, after all! A little over 3 and 1/3 of the almost 6 hours total were spent trying to thread that catheter into her aorta. Finally, he had to go through her jugular, which is a bit more dangerous. She was a champ through it all...never dropped any of her stats and kept her BP right on target. He told me her neck would be very sore, she had been through a LOT in there. Not surprisingly, she hasn't complained of her head at all- just the neck.

2pm- They came and told us we could go back to recovery. I walked in and she was sitting there, awake, and asking for food! She downed 2 full containers of apple juice in the first 15 minutes I was in there. She also had NO oxygen on at all! She looked amazing. She did make me a wee bit nervous when she started talking about purple unicorns in fish tanks, but she was still coming out of some pretty good sedation. Within the hour, we were back up in her room in the PICU. Other than some massive pain, she actually had a pretty uneventful night. Pain was controlled with oral vicodin, so she stayed pretty sleepy through the evening/night.

Breakdown of the shunt- She now has a programmable VA shunt. We have to be very careful around magnets now, because that is how you change the settings on the shunt. Only a member of the neurosurgery team does those changes. The ENTIRE shunt system is completely new, since bacteria did grow out on the old system. The shunt begins in her head like before, but instead drains to her heart and is then recirculated through her body in her blood system. She will take a baby aspirin every day from now on, and we have to be even MORE vigilant about fevers and infections.

Thank you to all who have been praying so faithfully for our girl. This has been quite the valley...in many ways, even scarier for me than the stroke in 2009- but God is ALWAYS good.

Operation

The operation is scheduled for tomorrow morning at 7:30. Due to the infection present in her stomach, the neurosurgeon has chosen to do a different procedure, called a Ventriculo-Atrial shunt. Basically, instead of the shunt going to the stomach cavity and being reabsorbed, it will now go to the atrial vein.
These are a couple of illustrations:

The shunt pictured on the left is what she had until the externalization took place. The shunt on the right is what she will be getting tomorrow. The best description that I can find of how it works is -"
What is a VA Shunt and what does it do?

This is a device which drains the extra fluid in the brain into the right atrium of the heart. A shunt catheter is placed into a vein in the neck and threaded down where the vein joins a larger vein called the Superior Vena Cava. This large vein returns blood to the right atrium of the heart . The cerebral spinal fluid is added to the blood supply and is absorbed."

This type of shunt is not used as often as VP shunts. She will probably have to take a baby aspirin every day to help keep her from getting a blood clot. 

Sorry this is so incomplete...I feel like I know so little about all of this that I can't really put it into words.

June 14, 2012 Surgery Day

Well, last night, Dr. Sandwell came in and told me that they had decided to go ahead with the externalization of the shunt. He almost sounded like the neurosurgery team was conceding, and so I asked him if we were doing a dangerous surgery for no reason. He said that even if the shunt came back completely uninfected, her body would still heal quicker WITHOUT a foreign body inside. I really like him. Where Dr. Silberstein is very loud and tell it like it is (which I like also), Dr. Sandwell is more quiet and reserved. He stands there and just listens. He said we would actually be moving to the PICU before the surgery even happened, and would not even have to go to a downstairs OR unless something came up. We would do the whole procedure in the PICU sterile procedure room.

Well, this morning was pretty much terrible. Grace is tired, hungry, and thirsty. She woke up about 6 times in the night, just screaming and hollering. These nightmares are terrible. She'll lay there and just cry- "No, not a needle!! I don't want a pokey! It hurts!" It is so heartbreaking to hear your child lay there and cry and cry. And then when they DO come in to do these things. Sometimes, I have to leave the room. Her veins are so shot from so many sticks and so many hospital stays...there are times it takes 8 or 9 pokes.

Anyway, we waited all morning for them to tell us what time we were going. The one antibiotic that she is on makes her mouth taste terrible, and she just begged for water. Begged and begged and begged. No one should ever have to be put in the place where they HAVE NO CHOICE but to deny their child's basic needs!! At 10:30 the nurse came and told me that we would be going to the OR at 11:30. At just about the same time, Grace had another crazy spell! Her doctor wanted to send her down for a repeat CT at that point, because she was starting to worry about whether the pressure in her head was increasing and causing seizures. However, she was scheduled for surgery at 11:30 and it was 11am. So, Dr. Blatt called Dr. Silberstein and asked him what to do. He said the best thing to do in this case was to go ahead with the externalization. If they got in there, and her shunt was draining well, they knew that the part in her skull was still working. If not, well then they would have to do an external shunt in her forehead also. The PICU team came right at 11:30 to get her. I spoke with the PICC nurse, Cheryl first. She told me that she does NOT even stick a kid if she can't find good access.Then Dr. Sandwell and Dr. Rubinstein came in. Dr.Rubenstein would be the one to administer the sedation. All he planned to use was propophol. He was 100% prepared to intubate her if the need arose, but would not do it "just because". Isn't that interesting? They wouldn't do a sedated CT without intubation, but surgery he would. Hmmm...seems to me someone didn't want to damage her lungs anymore than necessary. I was in the room right up until the point that she fell completely asleep. Cheryl did an ultrasound to look for PICC access and found nothing. She stayed in the room as a backup nurse, but told me right then she would NOT be poking her. I left the room and went to the FREEZING cold playroom to wait.

The procedure was only supposed to take an hour. About 45 minutes into it, I started getting REALLY antsy. Every little movement I saw scared me. At one point, I heard "Stroke team...trauma bay. Stroke team..." I had myself convinced that it was her...even though she was in the PICU not the trauma bay!! After what seemed like forever, I saw Cheryl. She came and told me she had one GREAT, was awake, and had asked for macaroni and cheese!! When I walked in, she had fallen back to sleep.I went over and squeezed her hand and kissed her on the cheek. In true Grace fashion she opened her eyes and said, "Mom did you bring the macaroni and cheese?" When I told her no, she closed her eyes real tight and said, "just call Pastor. He'll bring me some." It was hysterical. They had let her baby jaguar stay with her for the operation, and I think that made her have him in her mind. It was so cute, though. Then Dr. Rubenstein said that since the incision was just above her rib, maybe it hurt her to breathe deeply. Unfortunately, we couldn't test that theory because pain meds have a bad habit of suppressing the respirations also. Last thing we needed. So, we waited the night out, with monitors blaring and no sleep.

IV count- 11

June 12th and 13th 2012

June 12, 2012- Today, we started trying to feed her a bit more. She had been asking (sometimes literally begging) for food for a couple days, but had to be NPO for procedures. At this point, the vomiting began to get much worse. (Not sure if I even addressed the vomiting, but there ya go- lots of puke). She would eat, be happy as could be, and then with no warning whatsoever, everything for the last 6 months seemed to come up!
Today, her doctor told me that she did think she would have to have some type of surgery at some point. Whether this be abdominal, shunt externalization, a complete shunt revision, or a combination was unknown at that point. However, she felt very strongly that there WAS something going on that antibiotics alone would not be able to treat.

6pm- Grace had a yucky seizure. Eyes literally rolling around in her head and thrashing. Let's put this on the list of things I truly do not enjoy watching.
7pm- Noticed her words are getting more and more drawn out. Starting to wonder if she's post-ictal or if something else is going on???

June 13, 2012
Today started off great!! Grace got up and had a little breakfast and some juice. Then, the SWEET child life girl came an asked if she could go to the other playroom. So, off we went. She painted until the colors bled through to the table!! I caught lots of smiles, chuckles, an even a couple down right giggles. I hadn't seen her this way in over 2 weeks. When we got back to our room, we found a package with gifts. A baby jaguar for Grace, and a crocodile for Josiah. It was from our pastor and the church...the kids just loved them.
3pm- Grace had another episode. Not sure if this was a seizure, or what, but it was scary. She woke up from a sound sleep...screaming, crying, and sweating all over. This lasted for about 15 minutes. I didn't see any of the rhythmic movement that is a tell tale sign of a seizure though, so I think it might have been another terrible dream. She has been having horrible dreams for the past week, I think about all the stuff she's had to have done.

4:30 pm- Dr. Blatt came in and sat down. That's never good news. She told me that all the teams were now on board for her to have the shunt externalized. Tomorrow. She said that the chances that whatever this infection is JUST HAPPENS to be about an 1/8 of an inch away from her shunt tip without infecting the shunt were pretty much nil. While they do it, they will also try to get a PICC line into her, to give them better access for the antibiotics and blood draws. Scared mama....yes, I am. But..."What time I am afraid, I will trust in thee."

IV count- 7. Moving to PICU in the morning.

Strong Memorial, June 2012

Well, here we are...Rochester. Strong. PICU. I have a love/hate relationship with this place. On the one hand, I thank God that it's here for us when we need it. On the other hand, I hate that she needs it! Yet again. So, here's a rundown of what has happened since we got here.

Friday June 8, 2012- After a pediatrician visit, Dr. Leonard wanted us to head up here. Her neurosurgeon was on call, and they were expecting us in the ER. We got here, they got blood, started an IV (she was severely dehydrated, after only 2 days off of IV), and took her for a CT of the shunt. I am not allowed to go into CT with her right now, so I was waiting in the small playroom. Josiah had left his toy in her room, so I went back to find it. I walked in to a Dr. I didn't really recognize, getting a sterile procedure area set up. He told me he was with neurosurgery, that the CT showed her ventricles had enlarged, and as soon as she got back he needed to do a shunt tap. Talk about a blow!! She wasn't even back from CT yet. I signed the paperwork an went over to CT to wait for her. I was having a very hard time believing that she was in shunt failure. Neurologically, she was right on the money. They got her back to the room, and did the shunt tap. Thankfully, it tapped easily. The CSF was clear and completely uncloudy and the pressure was perfect. After breathing a huge sigh of relief on that end, we waited. I knew there was something wrong with her, and I knew it was bad, and I was scared that they were going to just send her home. However, she was badly dehydrated, so they admitted her for that. Up to 4-1600 we went.

Saturday June 9, 2012- I met the Rochester Dr. Leonard for the first time, and knew immediately we would get good care. This man listens. He didn't even touch her belly and she winced. He told me then he was calling in  pediatric general surgery. Her appendix looked fine, but the first thing he noticed was that her pain seemed to be RIGHT where the shunt tip was. Saturdays and Sunday's around here, not as much happens unless it becomes emergent. However, first thing Monday morning, we were going to do a CT of her abdomen with contrast.

Monday, June 11, 2012- CT day. I was told that she would have conscious sedation so that she could get the NG tube and get the contrast. We got down to the CT room, and the anesthesiologist came in. Next thing I knew, we were talking 2 hours of total sedation PLUS intubation. For a CT!!! I became very unpopular right at the moment, but I went ahead and told them I felt like I hadn't gotten the information right and didn't want to do it that way. We went back to her room, where I explained to the doctor that I wasn't comfortable with that much sedation for a CT. So, we did the NG tube with her awake. It was difficult, but she did fine...except it came out an they had to o it again. NO FUN. Thank God we did that CT though, because about an hour later the doctor came in and told me there was a large pocket of infection directly below where her shunt tip ends. Wow. That was scary, BUT it was an answer. Next step was two antibiotics- Flagyll and Cipro.

IV count-3.

June 2012 Hospital Stay...part 1

I'm going to start this post with a synapsis on Grace. As most of you know, she was in the hospital from Saturday night until Wednesday morning. She was sick much longer than that, however. Last Monday, Memorial Day, Grace started acting "off". She had been outside a bit that day, but not too long and not in the direct sunlight. At 2pm, my mom walked the kids the 1/2 block to the end of the road to watch the parade. (I was at work). I got home at 2:15, and went to meet them. Josiah came running to me, but Grace was lagging behind, limping almost as though she were hurt. I found out at that point that she had fallen down the last step on the porch. I attributed her somewhat strange behavior to that for about an hour, but at 3 pm she couldn't keep her eyes open and just wanted to sleep. She couldn't focus on anything. I didn't see a seizure in that time, but one seemed imminent. So, off to the ER we went. Grace has a harder time than most people regulating her temperature, because the hypothalamus is smack in the middle of the portion of her brain most affected by the stroke. We were there for a while, the doctor basically probably thought I was crazy, but if she was going to have one of those big, nasty, heat induced seizures, it wasn't going to be at home if I could help it!! We went home later with a sheet for a contusion, and the doctor said she had possibly had a slight heat stroke. No doubt she had.

Fast forward to Tuesday. She got up, and was happy as could be to go to school. She had a great day at school, with the exception of a few staring spells. However, Tuesday night, she woke up in the night just sobbing that her belly hurt. By Wednesday morning, she had a temp and a small amount of loose stool. I kept her home that day, figuring she had a stomach bug. She acted sick the whole day, but other than a low grade temp, was asymptomatic. We got through the day and night, and I figured Thursday would be better. Wrong. Thursday, my mom called me while at work and said she was now complaining of terrible pain in her belly, directly above where her shunt drains. Off to the pediatrician she went for a check. Sure enough, she was extremely tender in that area and so they sent her in for an xray...which came back ok. Thank God for that. So, we once again figured she had a virus and it was taking a long time to fully hit her. The whole time, a low grade temp continued. Friday and Saturday went by, both days with no energy and fever. However, with some Tylenol, she was better. Saturday afternoon, we even went to a graduation party. She wasn't the life of the party, but she did want to be there. Saturday night, though was a different story. I was a hopeful Mommy, I had our church clothes all ready and laid out. At about midnight, she started crying. I got up and went to her, asking her what was wrong. Her normal response is "it's nothing". This time she said, "It's my body." Then she turned over toward the wall, which puts her directly on her right side. As she turned that way, she started to just cry and scream in agony. Immediately, my mind went to the appendix. I got her in the car and took her to the ER, where they also immediately thought it was her appendix. A CT came back normal for the appendix though, but her bowel was totally full. By 5am,we had been admitted, because her white blood cell count was also high.

That morning, a pediatric surgeon came in and talked to us. He didn't want to go crazy with opening her up, so we started with trying to empty the bowels somewhat naturally, with molasses and whole milk enemas, milk of magnesia, and miralax. At this point, she started throwing up. However, we're not sure if it was because of the nasty stuff in her drinks or her illness. The first enema really had no output, but the second did a pretty good job. By Tuesday, she was considered cleaned out, and we were discussing coming home. Wednesday morning, her repeat labs were cancelled, and we went home. Where she just got worse. She was completely lethargic, refused to eat or drink, totally incontinent, and all she wanted to do was sleep. Not our normal Gracie at all. I let Wednesday and Thursday go by, thinking the enemas and hospital stay really took it out of her and she would perk up by Friday. Friday was her kindergarten graduation. I didn't plan to send her to it, but I did plan on us going so she would still be a part of it. She wanted nothing to do with it. We did go, and she did perk up for about 30 seconds, when her teacher handed her the diploma. All in all, though, she sat there, trying not to cry (sometimes failing miserably) and wanting to go home and go to bed. We left there, and I called her pediatricians office and made a recheck for 1:30 that afternoon. I was due at work at noon, but told them there was a chance I might have to leave. At 2:15 I got the call that they were sending us to Rochester. Her doctor just wasn't comfortable with her continued low grade fevers, pain level, lack of appetite or thirst, and lethargy. So...here we are, still with no real answers. I will update later.