Saturday, May 30, 2009
I have grown a lot over the years and now understand what it means to have true friends. It means that even though we may go months without talking it is OK because no amount of time or space can change the love and support shared between "true friends". In the past couple of years I have learned that many people that I would have called true friends at one point, were not, and as disappointing as that has been I have also realized that many people who I never thought really cared, do!!!!!
Some of those people are so amazing that they inspire me even without the opportunity to talk to them as much as I would like. So before I get busy with my new job, school, writing my book, and of course my little man, I just want to make sure you all know how much you mean to me. Even the strangers who take the time to say a prayer for David and I. I value you, I appreciate you, and at times like this I need you!
Just know it is people like you who keep me strong!!!!! It is like the butterfly effect. I pray that one day (soon =) ) God will use David and my story to change many lives. To share hope and inspire others. When that day comes and I have no doubt it will, know that all of you were a part of this. Keep smiling and know that your support impacted and changed two very grateful lives.
Friday, May 29, 2009
I think the new doc was so preoccupied fishing for what he saw in the Cat scan that he missed it. At this point it will remain in David's head unless there are complications or he needs another surgery. His neurosurgeon Dr. Moss says it is not worth it to go in just to retrieve the tubing. Had David's neurosurgeon been notified that David was going in to emergency surgery he says he would have come in to operate. All this mess could have been prevented to some degree because Dr. Moss knows David and his head!!!!!!
David is still covered in hives and still shaking a little but he is recovering. I will keep you all posted but thanks for all the love and support. GOD IS SOOO FAITHFUL!
Thursday, May 28, 2009
David is recovering but has not yet bounced back to his typical smiley self. His smile is what I have always held on too to push me through so I am trying to find his strength within myself but honestly I don’t know how my little champ does it. I have managed to squeeze a few smiles out of him but he is definitely not back to himself.
He is very swollen and at one point he could barely open his eyes. He had an allergic reaction to the meds so he is red and broken out in hives. It is obvious he is uncomfortable has been crying on and off all day. I wish I could take his place = (
In addition he keeps having unexplainable twitching and he has been jittering all day. I pray his shaking/jittering is just a weird side effect that will go away soon!
I don’t remember ever seeing him like this after surgery but, maybe he has been like this after prior surgery’s and I have just chosen to forget it. Maybe this hospital stay is just taking a toll on the both of us????? Idk
Please keep praying I will keep you posted!
David got out of surgery around 2:30. Doctors can not find the catheter (tube) that ran from his shunt to his stomach. The nuero surgeon searched and even had a pediatric surgeon come to assist him. They had to make the incision larger than they liked so now David has a new scar about two inches long in the middle of his stomach. After several attempts they were still never able to locate the catheter. They discussed risk and felt that the longer David was under anastia and his incision was open the higher risk of infection and complications so they deicide to sew him up and run scans in the morning.
At this point they are going to leave the catheter inside of him and we are crossing our fingers that it will not create any problems. The doctor says that he has a lot of scaring and that removing it might also create complications. Once they reconnected his shunts the doctor said that fluid rushed through. I can only imagine the pressure in his little head. Right before surgery we notice his one side of his chest was puffy and swollen. It ended up being the spinal fluid from David’s brain trying to force its way out of his head through his body.
They think that the shunt could have possibly broken because of its location. It has to be were it is now so that it can reach and drain the cyst on the left side of his brain. The doctor who operated says he doesn’t know what we can do if it breaks again which could happen so I hope to discuss that with Dr. Moss today.
In addition they ran a culture on his spinal fluid found some white cells which indicates infection. For now they will monitor him on antibiotics so there is no plan for an external drain and surgery. Please pray that this is not the case because if it is that will be a drain that runs the fluid out of his body for up to 14 days and then at least two more surgeries.
I have had better days with better news and more sleep but I am hanging in there!
Insult to Injury...
They told me I could go back to the OR with him. You see the operating room is a very cold room filled with anywhere from 5 to 10 people all in scrubs, masks, and hair nets. There are bright lights, large machines, surgical equipment everywhere (knifes, scissors, clamps) and everything is covered with blue clothes. They lay David on a table and generally I hold him in my arms place the gas mask on him and sing to him till he falls asleep. (A little less scary than them taking him from me lying on a table, people with masks hovering over him while they hold him down and place a large plastic object over his face). As they wheeled him in the Anesthesiologist said that me going back was “not going to happen”.
As I was rushed to say my goodbyes reality hit me and I began to ball. I tried to be strong but there was just no strength in me. Then the nurse asked if there was anything they could do to make things easier on me and I replied teach your Anesthesiologist some manners. He could have told me that it was an emergency and there just was not time but he showed no sympathy or understanding. I then told them that although to them my son was just another patient they were taking away my world to go operate on his BRAIN!
I don’t know what God is doing but in the last two weeks I have graduated, lost the funding source I have survived on for the last two years, got a job, lost childcare, and am searching for a new church because of some unfortunate situations. It is a bit overwhelming for someone who doesn’t adapt well to change! I am trusting God that he is placing me were I need to be at a very rapid pace for a reason and that in time I will understand it all but, at this time I am lost and very scared.
God I am holding on for dear life but, please send me a sign or something I feel like I am being consumed with fear and confusion.
I am still anxiously waiting for an update! David is still in surgury and has been for over an hour. Still no word but I will update the bog tomorrow.
Friday, May 15, 2009
I was recently asked to prepare a speech at a celebration ceremony for one of my scholarship programs. I just thought I would share it….
10 years ago a degree was a dream even to big for me. Higher education was a possibility way beyond my reach. This morning I woke up a college graduate, proving if to no one but myself all things are possible and no dreams to big. I have to give God the glory for were I am at today and were I know he is going to bring us in the future.
It has been a very long journey for me so I will do my best to sum it up in a just a few minutes. At many points it has seemed more like a roller coaster ride. I lost my father, a good friend, David has had many medical issues (including his most recent brain surgery number 28), and life has remain very complicated for me. But this ride is over and now I will begin my journey on a new ride. No matter how hard it has been we have made it and I am walking away a much stronger better person.
Graduating is bitter sweet because I must celebrate my success with out my father. I know he would be very proud so this ones to you pops. Graduation is much scarier than I expected. As frightening as the unknown can seem I am very excited to enter the next chapter in my life with many of you by my side. I just want to thank my Mom and all of my special friends who have held me up when the burden of life was pulling me down. I could not have done it without your support.
Last but not least I want to thank my son David who truly is the wind beneath my wings. David your smile has kept me going when life has seemed impossible; your courage to face everyday no matter what that day would bring has motivated me to get out of bed even when just the thought of getting dressed has overwhelmed me. Your love has carried me through some of the hardest times in my life and you have taught me so much more than any education could even though you are only 12. So as I go on to graduate school I will follow your example and remain strong no matter what gets in my way, because your are proof that even without words, even with limitation, even while enduring so much, that it is not our obstacles that mold us into who we are yet are responses to those obstacles.