The past 3 weeks have been quite the ride. When we left on that Saturday night I never in my right mind thought that we would have the journey that we had.
Tuesday March 23rd
I went to the U of C to speak to a resident panel re: family centered care. It was very powerful and an awesome experience to speak to residents and hopefully impact how they interact and deal with families. I visited some friends and went to pick the kids up at Mom and Pops house. I noted at that time that Lindsay had some red streaking on her chest but I thought I would give it time and see if she had bumped her chest.
We came home and I made dinner. The red streaking did not go away and I noted it in 2 other places.
Back of head and neck
Back of head (redness is located over her hardware)
Her Chest
I sent the pics to Frim. We emailed and decided that she needed to be seen Thursday 3/25.
Thursday March 25th
We headed to Clinic. It was decided by Dr. Frim that she was reacting to her shunt track. In our previous (non-blogged) hospital stay, she had numerous reactions to other meds so we did not question this. Dr. Frim was getting ready to go away for Passover and he said he would make arrangements for Lindsay to see Immunology to get tested for what she is reacting to. Lindsay's chief complaints: Headache, neck pain, light sensitivity, burning along her shunt and feeling like her hardware (valves) were going to push out of the back of her head.
Friday March 26th
We had rehearsals for Cinderella (4/3 & 4/8). Lindsay danced but complained of feeling icky.
Saturday March 27th
Lindsay woke up with severe abdominal pain. Curled up on floor. I made her get ready for dance and go and rehearse. We went to rehearsal and she was complaining of belly pain and headache. During her rehearsal she started crying and had to leave rehearsal and lie down. THIS is not like Lindsay and immediately perked me up. By the time we got home she was running a low grade fever.
As the night progressed she worsened. Nausea started and she was not complaining of severe pain at her belly button and right lower quadrant. That was starting to sound like appendicitis and with a shunt you have to be careful especially if the shunt drains to the abdomen. If the appendix ruptures it will introduce bacteria into her CSF and she would get meningitis. However, the nausea, headache, abdominal pain and low grade fever sounded like the last time she had strep. Since I could not say that it was NOT appendicitis I took her to our local ER.
The became worried that it was her appendix. However the CT was not conclusive and on the CT it showed that her bladder was largely inflamed. The ER dr told me that that only happened with severe bladder infections. We were admitted after the Ped on call and I argued with the ER attending. We felt she could go home.
Sunday March 28th
5am and we FINALLY get a room at the hospital. The ped had told the nurse that she would be in early afternoon and she would discharge us to home. :) This made me happy as we were having my mom's rescheduled Birthday Party. Due to the nausea and not being able to rule out the hot appendix Lindsay was put on clear liquids. The nausea really got bad and Lindsay was acting ok, as long as she did not move. If she moved the abd pain was horrible.
The Ped came in and was not comfortable discharging us. She wanted a surgeon to come in and tell her that it was NOT a hot appendix. So she called in a favor. He walked in, took her history, did his assessment and informed us he did not think that it was appendicitis. He said he felt that there was SOMETHING going on since her lab work had a "Left shift" (meaning that there was an increase in immature WBC cells which can indicate a bacterial infection). Then he told us that he would not operate on her that we would have to be sent out. I agreed with him and explained that since she has a history of anaphylaxis and they did not have a PICU that I would prefer to go to U of C if she needed surgery. The surgeon said that that was a good thing because he was recommending our transfer to Comer. He proceeded to tell us that her shunt tubing ended near the tip of the appendix and that was dangerous because if the appendix burst they were going to have to get that shunt tubing out of her ASAP. OYE!
He called the ped on call and then she called us and told us that she was being transfered. I asked about taking her myself and they said that it was too risky that she was at risk for a ruptured appendix. She got General Pediatrics (Gen Peds) to admit us so we did not have to go through the ER. So, we waited for an ambulance to come and transport us to Comer.
6:30pm the Ambulance arrived and by 7pm we were on the road to Comer and we arrive at Comer at 8:30. By 9pm we were settled in our room on the 6th floor. Gen Peds was there when we arrived and they were reviewing her paper work and told me that there was NO WAY that based on her paperwork did she have appendicitis. However, when they did her assessment, they did not like the way that her abdomen was presenting. They paged Peds Surgery and Peds Neurosurgery.
Since we had a friend in the hospital I already knew who was the resident. It was our favorite resident, Nassir. Looking back now...It was totally God's doing that Nassir was on call. Because had ANY of the other 2nd yr residents been on call I would have NOT allowed them to do any of the following because I do not trust them!
Gen Surgery came up and was just getting ready to start their history when Nassir walked in. Lindsay was visiting with out friend and immediately perked up for Nassir. Seriously, Nassir walks on water in Lindsay's eyes. However I told Nassir that I was tired of this in and out of the hospital crap and they needed to figure out what the heck was going on.
Nassir did the history and Christian (Gen Surg) took notes. Nassir informed me that if Gen Surgery had to open her abd at all that the shunt tubing in her abdomen had to be externalized. I told him about the increase in the headaches, light sensitivity and neck pain. He said he wanted to speak to the Attending. However while he was speaking with the attending he wanted a shunt series (xrays). We went for the xrays at 11pm, returned to our room at 11:30pm. Nassir spoke with the attending and came back to talk to me. Nassir spoke with the attending on call and he wanted Nassir to call Frim while he was still available. He wanted to know how I felt about externalizing Lindsay's shunt. I was confused. I had no clue why all of a sudden they were saying the tubing in her abdomen needed to come out. I asked Nassir if we could instead tap her shunt and go from there. Gen surgery ordered labs and Nassir came back and got prepared to do a shunt tap. Nassir must have had some clue that something big was going on because she shaved a spot of Lindsay's hair over her reservoir so that they could not say that the specimen (CSF) was contaminated. Lindsay was not happy. However Nassir did the tap and when the CSF came out it was green tinged and had red and brown flecks in it. In my mind it never registered that there was something wrong. I mean I KNOW there was...but my brain snuck off for the State of Denial. Nassir had told me that I would be moving to 5th floor in the AM, so I only unpacked the neccesities. By 12:30am we had blood work drawn, xrays done and shunt tap done. Nassir took the CSF and blood to the lab himself.
Monday March 29th
By 1am I had changed into my jammies and made the "bed". The last time I looked at the clock it was 1:15am.
3:15am....
"Mrs. Hart...., Mrs. Hart......"
I open my eyes...
"Good morning! We have to move Lindsay to the PICU. You have a very sick little girl..."
Rub my eyes and think...What the heck did he just say? Why am I dreaming of Nassir and being at Comer...The reality hits me....I AM at Comer.
"What did you say?"
"You have a very sick little girl. She needs to go to the PICU to have her shunt externalized"
Rubs my eyes, sits up, puts my glasses on. "What did you say?"
"Lindsay is a very sick little girl. She has gram positive cocci growing in her CSF. We need to take her to the PICU and externalize her shunt. In the AM I will speak with Dr. Y and ask him if/when we will need to remove the rest of her shunt."
"So, Can this be causing her abd pain?"
"Yes Mrs. Hart.... it is the CAUSE of her abd pain."
"When will be go to the PICU?"
"As soon as ID (infectious disease), Gen Peds, Gen Surgery and Neurosurg can get on the same page and get meds ordered for Lindsay"
By this time my brain was reeling. I knew that there would be no more sleep for me. I got up, put the bed back together, went and got dressed and brushed my teeth. It was 3:30am by then and I was feeling pretty alone. When we left Saturday I never thought that we would be dealing with this. I could not even wrap my head around the fact that she had meningitis. At this point in time I was still calling it, "Bacteria in her CSF". Then I knew I had to make phone calls. I called my mom and told her what was going on. I remember saying to her, "Mom, they keep telling me that she is a really sick little girl". I then called Darren. I called my mom first, incase I could not get a hold of Darren. This way my mom could tell him what was going on since they were coming to Chicago in the AM to bring me a car.
I went back to sit with Lindsay. She was wide awake by this time because everyone kept coming in and I was discussing antibiotic options with ID due to her gazillion allergies. At one point in time I remember just standing in her room and it felt like *I* was on pause and the world was on fast forward around me. At times it was hard to catch my breath. I knew that I could call Tommi (who was on Comer 5 with her daughter) but I did not want to impose on them....and I think that as long as I was alone I did not have to accept that what was going on was real.
By 5am it was time to to head to the PICU. They were ready for her and everything became very real very fast. When we got to PICU the room was full of people. We went through her history and it was then time to sedate her and remove her shunt tubing from her abdomen. I sat in the chair in her room, back in a corner. I could see everything that Nassir was doing. I was asked if I was going to be okay to stay and in a calm way that I have never felt before I told them yes. I watched Nassir open an incision at her clavical (collar bone) and find her shunt tubing and remove it from her body.. A few times she moaned while sedated but nothing horrible. It was rather savage to be doing at bedside. Had it not been my daughter I would have been even up closer checking all this out, but I sat and text messaged Tommi/Karen, messaged Darren a list of things to bring to the hospital. I remember thinking that if they made me leave the room I would have lost it. Soon they were done and her shunt tubing was lying across her chest and connected to an EVD (external drain). She was draining a LOT of CSF.
Gen Surg had asked for an abdominal ultrasound just to make sure that her appendix was not also inflamed. Her appendix looked good. It was smaller than on the CT-probably from removing the shunt tubing and the infected CSF no longer draining into her abd. I ran upstairs to ask Tommi is she wanted to go to ABP for coffee when I got a phone call that they were taking her to the OR. Now, I had not told her she was having surgery yet. I busted ass to get down to her before they told her. She had not yet realized that Frim was gone and that was ok. I was not going to tell her.
11am I informed Lindsay that because of the germs in her CSF that they have to take out all her shunt. That her shunt is making her sick. (She was still pretty loopy from the precedex) She took 1 look at me and completely woke up and said, "I am not having surgery today!!! Dr. Frim is not here!!!" So we had to have a quick discussion that it was not an option to wait 2 weeks for Dr. Frim to come back. Both of us were afraid. Dr. Y has never had to operate on my kids. It was nerve wracking. We went to preop holding and I met Dr. Y. The best way for me to describe him is as an odd little man. He tells me, "In children with PTC, when you remove their shunt they can have a shift in CSF and they can develop hydrocephalus. This causes the ventricals in the brain to get large. This compresses the brain against the skull. She will developed even high ICP and could go into a coma and die." At this point in time, everything was so surreal that all I could do was manage a nervous giggle and walk away. He then came up to me and started questioning me on what brought me to the U of C. He was quite interested in Gabe's craniosynostosis. The NPs decided that while Lindsay was in the OR they would place a PICC line. It came time for Lindsay to go to the OR. I walked her to the red line. There were tears (from her) and then I stood at the line as they took her away.
Tommi came to sit with me. I went to the lobby. I needed to get out of that horrible waiting room. We found the admissions clerk and she got our papers signed. Then we went back to the OR waiting room. Finally we were told that she was going back to the PICU. The PICC line took longer and more attempts than anticipated. Around that same time, my mom, the kids and Darren arrived. It was nice to see them and get settled.
After getting her settled in the PICU we were able to see her. Lindsay was in isolation so we had to get into gloves and gowns. Gabe and Hannah got really hot really quickly, but they still enjoyed seeing Lindsay. As well as Lindsay was so happy to see her "Honey and Bubby".
Honey & Bubby
As the evening progressed Lindsay started to decline. Other Veteran Moms had warned me that it would get worse before it got better. And they were right. By 10pm, all lights were off but the TV was on low. She was asking for narcotics every 90 minutes and could only have them every 3 hours. Our wonderful nurse help keep Lindsay as comfortable as we could.
Tuesday March 30th
The morning started with a trip to CT for a baseline CT Scan. You now just incase she developed Hydrocephalus and went into a coma and died. (Rolls eyes). It is quite a production to take a PICU patient anywhere. They have to take a "bag" with code meds, all the monitors, a nurse and a partridge in a pear tree ;) Well...that is what it seemed like. As we were heading out to get her CT we realized just then how much the light was bothering Lindsay. The blanket went over her head. She was very uncomfortable because she could not have narcotics yet, then moving her around, the pressure building in her head, she was very weepy. She kept asking, "Why are you torturing me?"
When we arrived at CT, it is very bright down there and she about came off the table. The CT Tech was not the most patient thing and Lindsay was less than happy about having to move. The 2 drs that I have had issues with in the past were in sedation and immediately jumped in to help get Lindsay as comfortable as possible. The CT was very quick and we got to move her back to her bed again. She was quite happy when we got back to the room because it was quiet but she was so miserable and hurt so badly. I was not as happy. I very firmly told my wonderful nurse that I wanted to speak to someone about pain control ASAP and if I did not see someone within the next 5 minutes that I was going to have the director of the PICU and a patient advocate in my room. Lindsay had been itching all night long. (Come to find out she is allergic to morphine)
The Neurosurg NP changed orders in the computer and came to see me 30 minutes later. I was okay as they changed the orders. We discussed properly managing Lindsay's pain. We were being moved to the neuroscience floor as soon as they got a bed.
By 2pm we were going to Comer 5. We got settled and that is when all hell broke loose for Lindsay. Until that time she had vomited but it had been minimal. Now it was not. She was vomiting a LOT and the pain was crazy bad. ALL lights and noises were to be turned off. The Shades and blinds were pulled, the room curtain was pulled, the door to the room was closed, the IV pumps were turned away from her (and they were still too bright). She was receiving some sort of med every hour. Nothing was controlling the vomiting and nothing was controlling the pain. She was sobbing. It was rough.
Wednesday March 31st
As bad as Tuesday was, Wednesday was worse. ALL night long Lindsay vomited or dry heaved. Our poor nurse worked so hard. It was discussed moving her back to the PICU since she needed so much care. I honestly think at that point in time I would have been okay with that. All night long she begged and begged for more pain meds. No one was comfortable increasing her meds much more or changing anything since she has such a large list of allergies and sensitivities. Then we also have this little issue with anaphylaxis.
By 4:30am Lindsay was running a 103.1 temp. Nursing paged neurosurgery and labs and xrays were ordered. Lindsay had vomited twice while they were intubating her/was intubated. So they wanted to make sure that she had not aspirated and developed pneumonia.
6:45am Neurosurg made rounds and felt the need to call in Peds Surgery to assess the severity of the abd pain. The thought process was that she developed an abscess in her abdomen from the infected CSF.
12pm Ped Surgery came to assess her. They want more abd xrays ordered. Lindsay has done nothing but sleep. She will wake long enough to cry for pain meds then she sleeps. It is not a restful sleep. But she sleeps. We are still IN the DARK. VERY DARK. As DARK AS I CAN MAKE IT.
4pm We head to Xray. Lindsay is hysterical as we are making her ride in a wheelchair. It took forever to get the xrays and she had to stand for 1. She can barley stand she is so weak. It was horrible. She was so upset and in so much pain by the time we got back to the room.
5:30pm Infectious Disease came in. A resident from the Resident panel that I spoke with was there. We found out that she did NOT have MRSA, that she had MSSA. :) They opted to change her antibiotics to oxacillin. Lindsay is allergic to/sensitive to Oxacillin. So we discussed the options and ID and myself came up with a plan. It was a well written thought out plan and stated if XYZ happened to do this, ect. She would be pre medicated with IV benadryl before each dosage of Oxacillin.
Darren was able to come up for a few hours after work today. It was nice to have him there so I could rest. I also went back to the RMH for dinner.
Thursday April 1st
We are still in THE CAVE as I call it. She rarely even interacts with me. All she does is cry for pain meds. By now everyone is stumped. We do not know how to make her feel better. No one knows if she is miserable from the meningitis, the peritonitis or it is increased intracranial pressure. The meningitis and increased ICP had a lot of the same symptoms. Lindsay vomited, cried for meds and slept all day.
Our very wonderful Nurse Nichole evaluated the amount of narcotics that Lindsay was taking and she intervened with neurosurgery and asked for a PCA for her to control her pain. They gave her a PCA and as soon as they were able to get it up and running Lindsay was happier with the outcome. The meds did not take the pain away but it took a smidge of pain away. Lindsay described it as going from a 10 to a 9.99. But if it gave her ANY amount of comfort...I was for it.
around 7pm we noted that Lindsay had an internal CSF leak. It was large and growing.
Friday April 2nd
Today we got good news. The antibiotics are working and the infection is under control. However my favorite resident said the H word (Home) and I became a bit focused on that. So those of you who know me, that means that I crashed and burned at 1 point during the day. Lindsay vomited and it was enough to push both of us over the edge. I asked the nurse to page Neurosurgery. The CLS came in and was spending time with Lindsay when the NP came. We had a long talk and while the bacteria from the infection was under control the meninges, her abdomen and everything else needs to heal and that can take days more. She assured me that we were where we should be in re: to her recovery. I told the NP that Lindsay looked worse than she did before surgery and the NP said she knew that. So we changed her PCA to allow her more doses of the narcotic and changed some of her antinausea meds. The NP spoke with one of the hem/oc NPs and they tried Lindsay on the same combo of antinausea meds that they have kids who are on chemo on. There thought was perhaps it would help Lindsay.
Saturday April 3rd
We should have been in Michigan City preparing for our Outreach Program of Cinderella. Instead, Gabe and Hannah were at my moms and Fayeth was at my Aunt Jane's and I was in Comer with Lindsay. I week ago I took Lindsay to the ER for what I thought was most likely strep throat, but maybe appendicitis. Wow! Has this been a ride.
We are STILL in a dark and quiet room. The text messages on my phone push Lindsay over the edge pain wise. She is not talking much, she is in a ton of pain. It is hard to watch her like this. Today she has not vomited. This is a small victory.
Sunday April 4th
The Easter Bunny came today. He actually came TWICE!
Lindsay and the Easter Bunny
Lindsay was in good spirits this morning. When the nurse came in Lindsay was looking through her name badge and all the stuff she has attached to it. (Our nurses have their name badges attached to laynards) She kept asking Emily where the other picture was and Lindsay kept flipping through the badges.
At breakfast, she asked me... "Mommy were there 2 people here delivering my tray?" I replied, "No sis, there was only 1." She informed me, "No mommy, I saw 2." Emily came in right after that to give Lindsay meds. I informed Emily what was said and then a light bulb went off. She informed me of what Lindsay said. Emily assessed the eye issue and Lindsay was having double vision.
When the on call Neurosurgeon came in he again evaluated Lindsay and it was decided that she was exhibiting vertical double vision. After a lengthy eval we decided to watch and wait and perhaps an MRI or CT would be ordered as well as a visit from Neuro-OPthamology.
She allowed us to turn the TV on softly (no lights though). She only wanted to eat 1 piece of candy. I would have allowed her to eat the entire basket if she felt up to it. I went back to the RMH for dinner. Darren stayed with Lindsay. By the time I got back she needed the lights out and her head was killing her. However no vomiting today. This was almost 48 hours since she vomited. Her CSF leak gets larger.
Monday April 5th
Still complains of double vision, NP does not think that she has double vision. Vomiting is back and bad. Still has bad pain, the good news...her large CSF leak is gone. Not sure where...but it is NOT on the back of her head. Yeah??? She is sleeping about 24 hours a day waking long enough to push her button. The NPs are not happy with the way she looks.
Tuesday April 6th
1:00am Lindsay's left eye is not working. When she looks to the left it does not move. Nurse is paging neurosurg to let them know.
6am I wake up to, "Wow mommy! My room looks like Mario world." (She is hallucinating) Hannah was shaped like a grumpet, Fayeth a mushroom, we had palm trees and 6' talking bear in our room.
8am Spoke with Nassir. Lindsay will be seeing neuro-ophthalmology and having a CT scan.
9:15am I was informed that my mom was on her way to the hospital by ambulance. They think she had a heart attack.
1pm Neuro Ophthalmology came. She hasa 6th cranial nerve palsy. They will check her after her CT to see if she has papilledema.
1:45 CT of her head done
2pm back to room. Neuro Ophthalmology checked the optic nerve. No papilledema noted.
5pm Nassir informs me that Lindsay will be going to the OR tomorrow to have a lumbar drain placed to reduce the pressure in her head. This will hopefully help the 6th nerve palsy.
My mom had angioplasty and an angiogram. They cleared the 1 blockage and placed a stint. She is stable but guarded in the ICU.
Wednesday April 7th
It was decided that Lindsay also needs an MRI before they place the drain. She went to sedation around noon. They sedated her and she went to sleep. 5 minutes into her MRI Nassir calls me. Dr. Y decided that it is just too risky to put a drain in her. They will do an LP to check her pressure and check her CSF. I was mad. An LP only buys a short period of time.
LP was done and her pressure was 31 on the max dosage of IV diamox. (Dr. Y said it was 38, but I am going with what the NP said). MRI looked okay.
By the time we got back to the room I was about to strangle someone. The NP promised me that Frim was coming into the hospital on Thursday and that she would ensure that I would see him before he left.
Thursday April 8th
I am assured that Frim will see us before noon. Lindsay is back on the OR schedule for Friday to have a drain placed.
11:55am I see Frim. LONG TALK. Going to the OR Friday to have her shunt replaced.
