Proverbs 3:5-6
Monday, February 20th, 2006“Trust in the Lord with all your heart…”
That has never been more difficult to do.
“Lean not on your own understanding…”
Lord, I don’t have a clue why You have allowed all of this!
“In all your ways acknowledge Him…”
Lord, help us to keep pointing to You no matter what hardships we face!
“And He will direct Your paths.”
Oh Father God, please give us the wisdom and discernment we need to make these upcoming decisions…the most difficult decisions of our lives!
As I sit here typing this, I can hardly believe it has been exactly one week since this incredible nightmare began. Last week Thursday morning, February 9, 2006, Joseph woke up at 4 AM complaining of abdominal pain. He went back to sleep and woke up for the day at 7AM. He was still complaining of his tummy hurting him, he didn’t want to eat anything, and he just wanted to sit on the couch and watch TV. I thought he might be getting a stomach flu and made an appointment for him to see his pediatrician at 11:30 AM.
By 9:15AM Joseph had taken a real turn for the worse. He was complaining of a headache (which he only does when it is shunt related), he had vomited 2 times and he was becoming more and more lethargic. By 9:30AM I knew I had to call 911. (Chris was in California for a business meeting, and I was by myself with Joseph and Grace.) I tried to explain to the 911 dispatcher that I needed to get my son to Madison (an hour and 15 minute drive from my house.) She said the only way we could have an ambulance was for them to drive us to the local ER where they would then stabilize Joseph and get him to Madison via another ambulance. It was so frustrating because I knew we didn’t have that kind of time. When Joseph has shunt failure, he goes from being completely fine to almost in a coma within less than an hour!!!
Well, during the five minutes between my 911 call and the ambulance arriving, I needed to pack bags for Joseph, Grace and myself, pack up Grace in her car seat, call Chris and call my parents. The ambulance arrived and put Joseph on a gurney. Grace and I drove in the ambulance with Joseph to Oconomowoc Memorial ER. Once again, I tried desperately to convey the urgency of our situation. The ER doctor spoke with Dr. Iskandar, our neurosurgeon in Madison, and they started Joseph on a medicine called “Mannitol” to reduce the pressure in his brain and “buy us some time.” We found out that the ambulance couldn’t even get to Oconomowoc ER for another 2 1/2 hours, so they decided to put Joseph on a Flight for Life helicopter. I was not allowed to fly with him…that was so terribly difficult for me! My parents met us at the ER and took Grace back home to feed her before coming to Madison’s hospital. I took my dad’s car and drove, sobbing my heart out all the way, to Madison.
By the time I arrived in Madison, Joseph had already gone through a Quick Brian MRI Scan which showed no change in the size of his brain ventricles (although this has never been a reliable test for Joseph, because his skull holds his brain so tight that his ventricles cannot increase.) The doctors performed a shunt tap (placing a needle into the shunt valve and trying to pull back some CSF-cerebral spinal fluid) which showed that there was a decrease in flow, and 20 minutes later Joseph was in the OR (operating room!)
Chris joined us later that evening after a very long day of flying from CA to Chicago to Milwaukee and then driving 1 ½ hours to Madison. Meanwhile my asthma had started to get worse and worse, I began running a fever and my whole body was throbbing. Chris, Grace and I stayed Thursday night at the Ronald McDonald House (only 2 blocks away from the hospital), and my sister Jackie, who had just finished a 30 hour on-call at Children’s Hospital, where she is a Resident Pediatrician, stayed with Joseph in his room all night. My parents stayed at the Best Western hotel nearby.
Friday morning it became very obvious that Joseph was not doing well. He still had an excruciatingly painful headache, he didn’t want to open his eyes and when he did open his eyes he became very dizzy. After watching and waiting all morning long, Dr. Iskandar did another shunt tap which showed okay CSF flow, but Joseph started declining even more, and at 1 PM they headed back to the OR to “explore” the shunt. Dr. Iskandar found a blood clot in the shunt catheter, so he did another shunt revision replacing the catheter. In recovery this time, Joseph no longer had a head ache and we rejoiced that he seemed to be doing a lot better.
As we discussed Joseph with Dr. Iskandar, we began to realize the severity of Joseph’s situation. Both Thursday’s and Friday’s surgeries were due to very small blockages in Joseph’s shunt…for another person these same blockages would not create such huge problems. Due to the tightness of Joseph’s skull and his slit ventricles (the ventricles in his brain are only little slits they are so small!) his brain cannot handle even the slightest changes; consequently, Joseph becomes critically ill VERY FAST! Dr. Iskandar told us it is way too dangerous to let Joseph continue like this. Our options? A procedure called an “ETV” (Endoscopic Third Ventriculostomy) where they drill a hole through the top of Joseph’s skull and down through the third ventricle of his brain trying to create a natural pathway for the CSF to drain. There is a major vein running through this area of the brain that if it is accidentally cut would result in instant death for Joseph. This procedure is usually done on patients who have an obstruction or a hemorrhage somewhere in their brain. Since this is not the case with Joseph, there is a less than 50 % chance that this procedure would even work.
The next option is a procedure called “intercranial expansion.” The doctor would cut a diagonal line on the top of Joseph’s head and drill 4-6 holes through Joseph’s skull separating it a bit so there is room for the ventricles to increase when Joseph’s shunt fails. This procedure wouldn’t “fix” anything, but it would again “buy us some time” when his shunt fails.
In order to perform the ETV at some point in the future, Dr. Iskandar needed a very specific MRI for which Joseph would need to be put to sleep again. Since we were already in hospital with an IV running, we decided that we would once again anesthetize Joseph and do the MRI Saturday. Because it was the weekend, and our procedure was “elective” (not emergent), we ended up not even getting to the MRI until 9:15 PM. It was so tough withholding food from Joseph—he hadn’t eaten anything since Wednesday night. When we told him he had one more “appointment” then he could eat, he said, “But Mommy, I’m so hungry!” It broke my heart!!!
Well, Chris and I went down with Joseph and waited as they put Joseph to sleep (again!), then we returned to Joseph’s room upstairs where we had left my dad with Grace. (My mom and sisters had gone home thinking things had calmed down for us.) Grace was crying so hard missing her Mommy. She had been such a champ through all of this, and we had kept her with us in the hospital taking turns watching her and watching Joseph. It was 10PM, so I thought I’d nurse Grace one more time to help her fall asleep. She began projectile vomiting all over me and Joseph’s room. Then she went completely limp! After projectile vomiting 5 times, Grace needed to be taken to the ER (down 2 floors from where we were.)
The doctors checked her out, drew blood and let her feed again to see if she could keep any milk down. She again projectile vomited. The doctors still said it was okay for us to go…we should give her 1 teaspoon of Pedialyte every 15 minutes to keep her hydrated.
As the doctor was telling me this, I said, “I think I’m going to pass out.” And I did.
Now I was lifted onto a table in Grace’s room in the ER, and I couldn’t move any part of my body. I could hear and feel the doctors touching me, but I couldn’t talk and I couldn’t move! I then began twitching out of control. It was very scary. The doctors gave me oxygen and determined that I passed out from sheer exhaustion and body fatigue. They also told me to eat and take care of my self…good in theory, but with all that was going on, almost impossible to do.
My mom and my sister, Mary Jo, came back to the Madison ER (now it’s about 3 AM) to take Grace and me home. Chris and Dad would take care of Joseph in the hospital. Once again leaving Joseph was one of the hardest things I’ve ever done. On our way to Mom’s house, Grace took a turn for the worse and began projectile vomiting yellow bile! We ended up driving straight to Children’s Hospital in Wauwatosa (near my parents’ home.) They began an IV for Grace because she was so dehydrated, and we waited to see if she would need to be admitted.
Meanwhile, back in Madison, Joseph was not doing well at all. He had come out of anesthesia with another headache and a fever. As I spoke with Chris, I realized that Joseph may have a very severe infection…one that could be deadly, and this could be my last chance to see him…we could lose him this time. We tried to release Grace still with the IV port in her arm so we could drive back to Madison, but once she was strapped into her car seat she again projectile vomited bile and became completely limp. Mom stayed with Grace who was then admitted to Children’s Hospital, and Mary Jo drove me back to Madison, stopping in Oconomowoc so I could get my breast pump and pump on the way to Madison.
Well Dr. Iskandar performed yet another shunt tap on Joseph which showed really good CSF flow, and PRAISE GOD, Joseph’s headache and fever went away, and he began eating again. Mary Jo and I stayed for a couple of hours and we drove back to Children’s Hospital where I then stayed overnight with Grace. It turned out that Grace had Rota Virus, a very awful virus with vomiting and diarrhea and is extremely contagious. After receiving IV fluids for 24 hours, she was doing a lot better, although she was still very sick. Since we didn’t want to get Joseph sick, Grace and I stayed at my parents’ home for the next 5 days! Again, it was heart breaking for me to be away from Joseph and Chris!
When I began writing this, we were still at my parents’, but now it’s Monday morning and we are at home again, thank You Lord. Although now, I have Rota Virus! And Grace is still waking up 6-8 times a night inconsolable except by nursing…we will see our pediatrician yet again this afternoon to try and figure that out.
We’ve learned so many lessons through this all…Grace will never again accompany us to the hospital when Joseph’s shunt fails…too many other germs for her to catch! We will be seeking several 2nd opinions in regard to Joseph’s situation and options for him.
Please PRAY for us…for Joseph…for the decisions we have to make…for my health and please for rest! We are so very thankful for the love and support of our family and friends through all that God has allowed especially in the past week and a half.
With love, Angela