Joseph’s Journey

Hello Family and Friends,

We wanted to share the latest chapter in Joseph’s journey with you. I’m sorry that this e-mail has not come sooner. I know that some of our family did send out e-mails and many of you have been praying and waiting to hear an update. We so greatly appreciate all of your love and heart-felt support!

On Sunday, June 24, 2007 at 5AM Joseph woke up screaming that he had a headache. Soon after he began to vomit and we were on our way to Madison with Joseph in obvious shunt failure. After having a shunt revision, Joseph never came back to his normal self, and 5 hours later began having a headache again. We thought he needed another shunt revision, however, a CTScan showed that his brain ventricles had collapsed and were almost gone. This situation is classic for “Slit Ventricle Syndrome,” which we now know Joseph has. Anyway, instead of just a shunt revision being done, he also had an emergent Intracranial Expansion. The hope is that by expanding the skull and giving the brain more room, Joseph will not need shunt revisions as often.

Chris and I were hit pretty hard with this all, because if you remember from our previous e-mails, we had really tried NOT to have Joseph have to go through an expansion. The emotional ramifications for us were tough, but that was only the beginning. Watching what Joseph had to endure was more heart wrenching than I could ever express. Incredible facial swelling, black and blue ears and neck, weight loss and overall emotional sadness.

On Thursday we were able to take Joseph home, hoping that by coming home he would begin to eat again and his morale would be lifted. However by Saturday he began having headaches again, and on Sunday we had to go back to Madison for another shunt revision. This time on our way to the OR, Joseph was yelling,”I hate the hospital! I don’t like this room! I didn’t think I’d be back here so soon…!” It was really hard to see him have to go through this all yet again.

We came home the following afternoon. The healing process continues, both physical and emotional healing, not just for Joseph but also for our family. We are thankful that since July 1, he has not had any sustained headaches, praise God! It really is a day by day and often a moment by moment kind of life…that is both very difficult and very character-building. When we were in the darkest part of this all, God kept impressing a song upon my heart. It is called, “Praise You in this Storm.” I’d like to close with those lyrics.

“I was sure by now God you would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it’s still raining. As the thunder rolls, I barely hear your whisper through the rain, “I’m with you,” and as your mercy falls I raise my hands and praise the God who gives and takes away. And I’ll praise you in this storm, and I will lift my hands. You are who you are, no matter where I am. And every tear I’ve cried you hold in your hand. You never left my side and though my heart is torn, I will praise you in this storm…”

Amen. Love, Chris and Angela

First of all, please forgive us for not writing you sooner. We know so many of you have been waiting to hear how we are doing…how Joseph is doing. It has been such an intense, very difficult time for us, and the days just haven’t allowed us time to send an e-mail.

AN EXPLANATION OF THE DETAILS: (for some of you this is just a recap…)

Joseph had an ETV (Endoscopic Third Ventriculostomy) with shunt removal on Wednesday, July 12. In this procedure, a hole was punctured in the 3rd ventricle in Joseph’s brain creating a natural pathway for the cerebral spinal fluid (CSF) to drain. An ICP (Intracranial Pressure) monitor and a Ventriculostomy were placed as well. The ICP monitor tells us the exact pressure inside Joseph’s brain at all times. The Ventriculostomy is an external shunt or draining tube which drains the CSF at the level which the doctors determine. For instance, after surgery the “Ventric” was set at 0 which meant all fluid was draining. The pressure limit was then increased to 10 which meant that when Joseph’s brain pressure reached above 10, the CSF would automatically drain. It’s a sort of release valve. In the best case scenario, the Ventric would be clamped (completely shutting off external drainage) forcing the new pathway to work for long and longer amounts of time. With all of this tubing, Joseph is on a very short tether (less than 12 inches) which allows him only a small amount of movement in bed. You can see that in the picture we sent you.

WHERE WE’VE BEEN:
Since Wednesday we have tried several times to clamp the Ventric. Initially he went for 40 minutes until he got an excruciating headache (because there is no drainage and the pressure builds up until we unclamp him and allow him to drain). Each time after he has been able to handle less and less time being clamped before becoming symptomatic. This process has been SOOOOO hard to watch him go through! As the doctors have said, “There has been no progress.” That was difficult to hear. In a normal functioning brain the pressure is 15 or less. Joseph’s pressures have at times exceeded 50!

Joseph has been experiencing a lot of fear when he is sleeping waking up several times yelling, “I’ve got to get out of here,” or “I’m falling!” He is extremely terrified until Chris or I help to comfort him. Joseph has had an allergic reaction to the antibiotic (a Penicillin derivative) he was given which caused a rash from head to toe and causes his head to itch like a farm of fire ants was on his head! His antibiotic was changed, and he was given Benadryl to help the rash and itching.

Last night after 2 1/2 hours of “out of your mind” itching when the nurse was giving Joseph Benadryl, I noticed that his fingers were swelling. The IV had infiltrated. Then began a horrendous process of trying to get another IV started. After 1 1/2 hours of trying, the doctor finally got the IV in. PRAISE GOD!

GRACIE DAISY:
In the midst of all of this stress, we originally tried to have Grace stay at a nearby hotel with my family. She did not do well. She wouldn’t sleep, and it was obvious she needed to go home. That was REALLY difficult for me. I had never been away from Grace until that first night Joseph was in the ICU, and now my kids would once again be 1 hour and 15 minutes apart. Although it was tough, it ended up being the best thing for Grace. My mom has stayed with Grace, and she is starting to sleep again. (Please continue to pray for her as I come home and then leave again repeatedly.)

WHAT’S NEXT?
We are scheduled for the OR (operating room) on Wednesday, July 19, to put the shunt back in. Because of the headaches Joseph has been living with up to this ETV surgery, Dr. Iskandar is considering trying a different type of shunt—one that would help with overdrainage which we think may be causing Joseph’s headaches.

The doctor scheduled the surgery for Wednesday to allow two more days to see if the ETV would work. With the time Joseph can be clamped before getting a headache lessening every time, it is highly unlikely that the ETV will work. And to be honest, Chris and I are ready to “make it better” for Joseph—if a shunt is what we need to help him, then we are so very thankful to God for the blessing of a shunt.

You may remember that the greatest reason for performing the ETV was to hopefully “buy some time” for Joseph when his shunt failed. The thinking is that this extra hole may help when the shunt begins to fail. In the past Joseph has gone from his base line to being critically ill in under one hour! The icing on the cake (which became a wonderful hope of ours) was that Joseph could be shunt-free. While it really seems that being shunt-free is no longer possible, we are still hopeful that the ETV will help Joseph to have more time when his shunt does fail. How much time?!? We won’t know until we experience it.

CHRIS and ANGELA:
You can imagine how difficult this has been and is for us to watch our son go through this all, but we know that God is still in control! There is song Fernando Ortega wrote which says it best…”When the morning falls on the farthest hill, I will sing His name, I will praise Him still. When the dark trials come and my heart is filled with the weight of doubt, I will praise Him still. For the Lord, our God, He is strong to save from the arms of death form the deepest grave. And He gave us life in His perfect will, and by His good grace, WE WILL PRAISE HIM STILL!”

We thank the Lord for all of you, your prayers and love for us. “In our weakness, He’s made strong!” Hanging onto the One Who’s hanging onto us, Chris and Angela

Hello Family,

It was great being with you all on Easter Sunday! We only regret that Joseph was having such a tough day… Today Dr. Iskandar called me back, and we discussed Sunday’s happenings and Joseph’s current status. Chris and I wanted to share the details with you all, since you were also a part of Sunday.

Dr. Iskandar said that the shunt tap which was performed on Sunday was a “very good shunt tap and showed that Joseph’s shunt is functioning well.” He went on to say that we will continue to wait and see what happens (a “game” we’re getting very used to). There is a possibility that Joseph has a condition known as “Slit Ventricle Syndrome.” The brain actually collapses around the shunt catheter so the pressure starts to build creating a headache. Since Joseph’s brain is non-compliant (that means his brain ventricles do not expand when the pressure increases), his brain cannot handle the increase in pressure. Often times a person like this will vomit creating just enough expansion in the brain ventricle to clear the shunt and start it working again. It’s possible that Joseph lying flat on the way to Madison also allowed this to happen…explaining why the headaches finally stopped.

Right now Joseph is doing great! Monday morning he was his normal self! So we will continue to walk this faith journey and pray that researchers find the cure for Hydrocephalus soon!!! God is in control, and He has a plan that is bigger than any of us can begin to comprehend. Thanks to each of you for your love, concern and continue prayers for Joseph and our family. We are BLESSED to have you all as part of our support system. To God be the glory!

God’s blessings and our love, Angela

Another long one…you might want to print it out before you read it…

Dear Family and Friends,

The intensity of our journey the past few days is almost beyond words! In order to tell you the complete story, I want to go back to Saturday morning (Nov. 4) when Chris and I were at the Badger football game. It was twenty minutes into the game when we received a phone call from my sister, Mary Jo, who was watching Joseph and Grace for us. She told us that Joseph had a headache; I could hear him screaming in the background. As you know from my previous e-mails, Joseph has been experiencing terrible headaches for the past several months. Well, we left the game as fast as we could to head home. When we were outside of Madison, Mary Jo called to say Joseph had fallen asleep. We decided to chance going back to the game. After parking once again, we were walking back to the stadium when we saw a woman walking with a terrible limp. We approached her to ask if she needed help. She told us she had misstepped off the curb onto her ankle, and we helped her walk the 4 blocks back to her apartment (directly across from the Stadium). After helping her up the 4 flights of stairs, getting her ice and her cell phone and leaving our cell phone numbers in case she needed us again, we headed back to the game. It was such a great blessing to be able to help Peg out! The Badgers won! And we enjoyed an early dinner with friends before heading home. 

Joseph was doing great when we arrived home. He ate dinner and had fun “fencing with Daddy” before bedtime. At 8 PM, Joseph began another headache, this time extremely painful and accompanied by severe vomiting. It continued throughout the night, and by 3:30 AM Sunday, we knew we needed to take him into the ER. This is when the obstacles began… the Resident doctor did not take us seriously both on the phone and when we arrived in the ER. He made several very insensitive and arrogant comments, and he had absolutely no sense of urgency! Meanwhile, Joseph was still screaming out in pain (6AM at this point) and had vomited about 40 times (8-9 episodes). Eventually they did do a Quick Brain MRI which showed no change in Joseph’s brain (as you might remember, the scans have not been reliable for us in the past either.) And they admitted Joseph for observation…BIG MISTAKE! He should have gone from the ER to the OR! Instead we watched Joseph continue to suffer for another 8 hours. In that time we met with  the Attending Physician, the partner for our neurosurgeon who was not on-call this weekend. When  the Attending Physician came in, Joseph had fallen asleep for about 15 minutes. The Attending Physician said that we would see how he was when he woke up. Since the big confusion was if this was a migraine headache or shunt failure, it seemed appropriate to wait. If when Joseph woke up he still had a headache, then the plan was to take him to the OR where a spinal tap would be performed to see what the pressure was. If it was higher than the normal 18, then the Attending Physician was going to put in a frontal shunt in the left front ventricle in Joseph’s brain. (This is different than the shunt Joseph has had in the back of his head all along.)

It was tough for Chris and I because we had to make some really big decisions, and our trust factor with this “New Guy” was a lot less than with Dr. Iskandar who had been with us through everything. We prayed from the very depths of our souls for wisdom and discernment! In walks the Nursing Assistant, who ended up being the room mate of our regular babysitter! Elizabeth wasn’t even supposed to be on the Pediatric floor on Sunday, but things changed, and there she was helping us in the midst of this huge struggle! Such a reminder of God’s grace!

Anyway, when Joseph woke up 15 minutes later his headache was still incredibly painful. We then informed the resident, and we were told that we were waiting for the OR to “open up.” We waited, and waited, and waited…until Joseph began to be Bradychardic (heart rate was 52!), he was having SVT (a lethal heart rhythm, he was having apnea (I had to yell at him to breathe!) and he was becoming very unresponsive! After trying repeatedly to get the doctor again, finally I went to the nurse’s station and said to our nurse, “I demand to see the neurosurgeon NOW!” We were in the OR 10 minutes later! Praise God!

The spinal tap was performed…Joseph’s pressure was above 55! And his shunt surgery was successful. We did have the opportunity to speak with Dr. Iskandar over the phone and later in person. He relayed his utmost confidence in  the Attending Physician’s skill as a surgeon and apologized profusely for the error of the “system”…the residents, and the breakdown in communication. Unfortunately, they did make many mistakes with Joseph. Dr. Iskandar told us that Joseph should have gone from the ER to the OR in 20 minutes, NOT the 9 1/2 hours it did take!!! Dr. Iskandar told us that it would NEVER happen again! Our situation was a learning experience for the doctors…that is a good thing.  

On Monday morning when Joseph was telling the doctor what his headache was like, he asked me, “Mommy, what is that thing the pirates shoot off called?” I said, “A canon?” He said, “Yeah! It felt like there was a canon going off in my head!” (Can you believe that? A four year old—more descriptive and mature than some adults would be!) 

Currently, Joseph is doing well; however, he has had periods where he is in a lot of pain in his lower back and legs. Initially we thought this was due to the spinal tap, but that pain should have been short lived. We are concerned why the pain continues…he can’t walk when he has these episodes, and I have to carry him. Also, today at 12 noon, Joseph had his first headache since Sunday. I felt so defeated when he told me, “Mommy, my head is hurting…” It was like having the wind knocked out of my sails!  It was a small headache lasting only 5 minutes, thankfully. We have no idea what will happen now…will the headaches continue? Oh how I pray NOT! But no matter what happens, God has made it abundantly clear that He is with us in the midst of everything!

You know when we first started e-mailing you all asking you to pray for a ”Miracle for Joseph,” I never imagined that the journey would just keep getting more intense. Is it possible to trust that God is still in control when things feel so out of control? Is it possible that God hears our prayers and still says no to a complete healing because He has a different plan? YOU BET!!! Saturday morning at 11AM, I didn’t even know a woman named Peg existed…

Remember that woman who we helped? It turns out that she did break her ankle, and we would never have been there to help her if Joseph had not gotten a headache Saturday morning causing us to leave the Badger game! See, it was totally God’s grace that Joseph was okay for a couple of hours after that first headache which allowed us to return to the game, because it is most likely that his shunt was already failing! 

Thank you for your prayers. Thank you for your love. Thank you for growing with us as we all see God is much bigger than the box we so often put Him in!

Keeping our eyes on Him…no matter what! Angela and Chris Batterman

P.S. It’s pretty nutty, but in the midst of this all, Grace has a double ear infection, Joseph has a sinus infection, and I’m getting a heart ablation done next Tuesday! Please keep praying…know that we pray for you all as well! We love you.

We wanted to give you an update on Joseph and ask for continued prayers. Since we last wrote some things have changed, some have not. Joseph had his 4 year old birthday and began Preschool in August. He LOVES school! The struggle remains with the endless amount of headaches he continues to endure. We took Joseph up to Mayo Clinic for a second opinion on his headaches. The doctors agreed that medication was the best route, however the dosages recommended were significantly higher than the dosages our doctors in Madison had prescribed.

These headaches vary in length and intensity; the really painful headaches can take up to 12 hours to pass and at times are accompanied by vomiting. It continues to be very difficult to watch Joseph suffer.

Our neurosurgeon in Madison is still considering that the headaches could be a result of an incompatibility between Joseph’s brain and the programmable shunt he has. We will be seeing our neurosurgeon in 2 weeks to evaluate the situation again. Until then we are trying two different medications (at an appropriate dosage for Joseph’s age and size).

Please pray for us as we once again discern the Lord’s leading for Joseph. We don’t want Joseph to have yet another surgery if the headaches aren’t truly shunt related. The problem is NO ONE really knows, and there is no true diagnostic way of finding out. Would you pray with us that Joseph’s headaches would be lifted from him? Pray that the Lord makes the next step for us extremely clear…should we consider a different kind of shunt?

This journey continues to be really tough. Our pastor preached on “Healing” this past Sunday. He said some people are healed, some are not, and we don’t know why God chooses it that way. Oh how I long to have my little 4 year old boy healed! But my deepest desire is to be steadfast to the Lord and to “run with perseverance the race marked out for us. Let us fix our eyes on Jesus…” (Heb. 12:1-2)

Thanks again for your love and prayers, Angela (Chris, Joseph and Grace too)

Dear Family and Friends,

Hallelujah, we’re home again! So much has happened since we last wrote…

When it became clear that the ETV did not work for Joseph (at least to remove the need for a shunt), we spoke with our neurosurgeon about the type of shunt that would best help Joseph. We showed him the calendar filled with highlighted days when Joseph suffered from very painful headaches which resolved after he rested for about 2 hours each time. Dr. Iskandar said, with confidence, that the headaches were due to overdrainage and recommended a “Programmable Shunt.” This is a shunt that is set at a certain pressure (Joseph’s is currently set at medium pressure) and can be changed by using a large magnet held up to Joseph’s head. Dr. Iskandar said ALL shunts overdrain–even Programmable Shunts at times overdrain—because they are not the body itself. He also told us that Programmable Shunts are more difficult to put in and more difficult to take out (frustrating news for us, as you can imagine) but he said something needs to change to hopefully lessen the amount of headaches Joseph lives with.

Joseph had shunt surgery Wednesday afternoon at 1:45 PM. The surgery was without complication, praise God! We were amazed how well Joseph did in recovery. He did not have breathing problems and did not become dehydrated as in previous surgeries–both wonderful answers to prayers! Dr. Iskandar was able to use the hole from Joseph’s previous shunt for this new shunt which we were so thankful for. His neck and chest (where the shunt tubing is tunneled underneath the soft tissue) and his abdomen (where there was an incision to pull the tubing down into his abdominal cavity) were the most painful at first, although he quickly told us that they were “just sore, not hurting a lot.” It was so great to see Joseph up watching “Pinocchio” and eating Chicken Fingers and French Fries at 7:00PM that night!!!

After spending Thursday morning in the hospital, and making sure Joseph had some time to play in the Play Room :), we packed up and headed for home! Although his stamina isn’t 100% yet, he is doing really great! He has had 5 headaches in the past 3 days since surgery, and the headaches may not go away, but we are so thankful that we have our little boy back again, and we are so glad we stepped out in faith to try the ETV.

The morning of July 2, when we all prayed together at 4 PM for Joseph, the Lord led me to Psalm 121. The cool part is that at our prayer gathering, a friend told me that God had given her a Scripture for me…Psalm 121. Then the following Sunday at church we sang a song with the words from…Psalm 121. Then tonight before I wrote this e-mail, I read a message from a friend about a sermon their pastor had given on…Psalm 121! It is a very encouraging Psalm which reads, “I lift up my eyes to the hills–where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip–He who watches over you will not slumber nor sleep. The Lord watches over you–the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm–He will watch over your life; the Lord will watch over your coming and going both now and forevermore!” Isn’t that great?!?

I have to be honest, it is hard for me that God said no to all of our prayers for complete healing for Joseph. I KNOW He could have so easily let the ETV work completely. But that doesn’t change our faith and trust that God’s will is best! While we don’t know why the Lord has allowed this journey for Joseph and for our family, we do know that His plans are to prosper us and not to harm us. God has awesome plans for Joseph…he has already touched so many people’s lives. Thank you all again and again for your prayers, support, cards, gifts, meals and overall love! We appreciate your continued prayers as we face whatever comes next in this journey…next Thursday you can pray that Joseph is once again very brave as the staples are taken out of his head (that can be pretty traumatic for him).

We love you all, Angela, Chris, Joseph and Baby Grace

Hello again!

A couple of details…

1) Joseph’s surgery date has been changed to July 12 (the doctor’s schedule changed).

2) This Sunday at 4 PM is our time of prayer in room D271 at Elmbrook Church. I know many of you have written us to say you cannot be there, but we REALLY appreciate your prayer support from wherever you are! The coolest thing is God hears all of our prayers no matter where we are!

3) Many of you have asked how we’re doing…how Joseph is doing. We are having a great summer! Everyday is a gift from the Lord, and we are very thankful to Him for our precious children. Grace had her first birthday last week, and she is walking/running everywhere! Joseph is riding his bike and enjoying playing outside. He does still struggle with headaches, but he is so resilient and continues to love life!

4) We really appreciate all of your prayers. We can feel God’s strength and power at work in our lives, and we pray that we can in turn be a blessing to others!

The next e-mail we send will be after Joseph’s surgery…In hopeful anticipation for all that God has planned, Angela (Chris, Joseph and Grace too)

Hello All,

Due to our neurosurgeon’s schedule and our desire to have him present the entire 2 weeks Joseph will be in the hospital, we have postponed his surgery to July 14.

We now need your prayers that Joseph does not go into shunt failure before this new surgery date. We realize that by waiting there is a greater risk that the ETV may need to be done under an emergency situation; however, we’ve taken these measures believing that this is best for Joseph and our entire family.

Specific prayer requests for us are: 1) That Joseph’s headaches subside and do not get worse 2) That Joseph does not experience shunt failure between now and the new surgery date 3)That Chris has the grace to accomplish all that he needs to on the work front, while our family life is so intense 4) Health for all four of us–in the next three months especially.

We so appreciate your love and prayer support! Thanks for passing our messages on to your other family and friends.. We will keep you all posted.

Blessings, Angela and Chris

 P.S. A note to those of you who have already responded with a desire to help us…first of all, thank you! We will definitely take you up on your offer in July. Until then…one day at a time!

Dear Family and Friends,

Since we last wrote to you, Joseph has been experiencing intermittent, extremely painful headaches. On two different occasions we have taken him to the ER for possible shunt failure, although the headaches resolved upon our arrival at the hospital. On one occasion, he was kept for observation overnight, and this past Tuesday the neurosurgeon performed a shunt tap (which was VERY horrendous for Joseph this time) to rule out shunt malfunction. It has been and is very difficult to watch the suffering Joseph is experiencing! There may be various reasons for the headaches, however, one thing has become clear–we need to do something sooner than later to hopefully help alleviate the problem.

After obtaining a second opinion from a very reputable neurosurgeon in Salt Lake City, we have decided to proceed with the ETV (Endoscopic Third Ventriculostomy) for Joseph. In this procedure a small perforation is made in the thinned floor of the third ventricle in the brain, creating a natural pathway for the cerebrospinal fluid to drain. Joseph is not an ideal candidate for an ETV because he does not have a tumor or obvious blockage, however, there may be an obstruction we cannot see on the MRI scans. There is less than a 40% chance that the ETV will work for Joseph. If it does work, Joseph would be shunt-free!

The surgery is scheduled for Wednesday, April 19 at 8:30 AM. Following the surgery, Joseph will be hospitalized for up to 2 weeks. He will be in the ICU where he will not be able to leave his room for one week. Throughout this week there will be intense monitoring happening. If the ETV works, Joseph will be able to leave after one week in the hospital. If it does not work, Dr. Iskandar will then have to place the shunt back in, and the following days will be recovery from that surgery.

As you can imagine, we are feeling very overwhelmed right now. This time will be unbelievably intense for Joseph and our family. WE ARE PRAYING FOR A MIRACLE! And we ask that you and ALL of your family and friends join us in this prayer! Yes, it is “against the odds” for this ETV to work for Joseph, but we serve a God who is at His best “against the odds!” What were the odds that David would defeat Goliath, or that Abraham and Sarah would conceive a child when they were 100 years old?

There are risks to this surgery…a brain bleed, a stroke…death. Yes, God could allow any of these to happen, or He could once again perform a miracle. Please pray for Joseph and our family. Pray that Joseph’s spirit is strong and that he doesn’t become depressed through the one week in the ICU. Pray for his physical strength (right now he is being treated for a possible sinus infection…). Pray for Chris that he can yet again balance work and family during this time in the hospital. Pray for Grace (our almost 10 month old daughter) as she faces a lot of time away from her Mama. And please pray for me, Angela, that God would breathe his peace into my heart and give me strength for the journey ahead.

We will continue to keep you updated. To God be the glory! Angela and Chris Batterman

            “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 2^nd 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