Joseph
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