Matthew Lipp's Journal
Written 18 hours agoLet everything that has breath praise the Lord. Praise the Lord.
It was so much easier to update when I was filled with good news and happy anticipation. Since Sunday we've been dealing with harsh realities instead. Matthew has had a seizure a day since then, including one about an hour ago. Dr. Zupanc informed us that he has epilespsy; a diagnosis, I'm ashamed to admit, that brings a stigma with it for me. She says it will be controllable with medication but it will be with him all of his life. We've since researched and knowledge is power, we're not as intimidated anymore.
Along with that she brought the news that Matthew did suffer brain damage when he experienced all those seizure when this began. She felt compelled to remind all of us how near Matthew came to death.
Those of you who have seen him know, Matthew is here with us so whatever damage was done is insignificant to those of us who love him. Dr. Zupanc indicated that math skills will probably never be the same for him, he may have to rethink any career choices that might have included that. I nearly laughed with relief, I might have if those words,
"brain damage," hadn't still been floating in the conversation.
The good news in that though, is there is no physical damage to his motor function. That means the shaking and inability to walk are not caused by damage to his brain. There is a diagnosis for that as well now, conversion disorder. Basically, it means the trauma he endured during his illness was so intense that he had to deal with it psychologically somehow. Instead of letting those emotions out, he's converted them into this anxiety, tension, that his body builds up into the reactions we see. He needs intensive counseling, and possibly even more, to learn to redirect these feelings. The urgency of this treatment is critical, if not treated promptly and correctly the physical symptoms can become permanently debilitating. Once again, Joe and I fear we will have to battle Kaiser for competent treatment. This is highly specialized and Dr. Zupanc has been very specific about not delaying. She says with this treatment he can expect to play baseball again, I can hardly wait!
Matthew has grieved while we've been here, it's so hard to process all of this information and he still struggles with his short term memory. He sits and thinks, is sad, and then has to ask me what he's so sad about because he can't remember. Dr. Shrey comes along on rounds, later he comes back to visit and soften Dr. Zupanc's rather tough delivery. There are few men I know who are kinder and more caring than this amazing doctor and we feel so blessed that God brought him into our lives. He remains optimistic and said the seizures will be under control before we leave the hospital. He also has friends at UCLA who are doing a study on pediatric conversion disorder, he's going to contact them and see if they are willing to take Matthew on even though its too late to be added to that study. We told him that if Kaiser didn't approve it we'd empty out my retirement or do anything we have to so that Matthew will get the treatment he needs. Matthew's strength, courage and steadfast love for God continues to bless and amaze me. His body contorts in pain at times but he looks at me and winks or blows me a kiss, communicating that I shouldn't worry. Talk about loving someone so much it hurts, that's how I feel about this incredible young man.
Please continue to keep him in your prayers, we so appreciate hearing from those of you who continue on this journey with us. Comments here, liking the updates or messages on Facebook all help strengthen our family for this battle.
Written Dec 14, 2013 11:56pm"It is The Lord who goes before you, He will not leave you or forsake you. Do not be dismayed." Deuteronomy 31:8
The world has gone on outside this hospital; death, pain and suffering have visited families near our home. We hurt and are praying for others who are suffering tonight, our hearts go out to you all. A.L.H.S., our hearts are especially heavy for you and you have our deepest sympathies.
Its quiet here, at this hospital. I think it's because so few people choose to take care of health problems over the holidays. Those who are here don't have the choice. We are fortunate though, because this is a very good place. This evening Matthew had an "episode." The EEG technician (the same lovely lady from last night) had the neurologist on the phone before the nurse left our room. It wasn't "our" neurologist but the on call doctor. The good news is, he wanted us to know that what he saw was NOT seizure activity! While its frightening and painful, we are so blessed to have more confirmation that supports Dr. Zupanc's theory.
Written Dec 14, 2013 12:08amThis morning during rounds we found out the Dr. Zupanc went to medical school at UCLA. She just keeps getting better! We are so impressed with everything here at C.H.O.C. All of the staff has been kind and professional but the EEG technician highlighted the reason we fought so hard to get here tonight. Matt got very tense around 6:00, not uncommon to us these days. They watch the monitor 24 hours a day, she noted he was tense as she monitored and came in to check on him. She ended up spending about an hour adjusting leads and talking with us before she was satisfied that he was okay. The level of care here is remarkable.
Matthew's major complaint is boredom, I'm happy that's it for now. The docotrs are aggressively decreasing his medication levels, we continue to pray that he responds as well as Drs. Zupanc and Shrey believe he will. For now he's keeping to himself, not posting or texting anyone today but lots of praying.