Posted on January 6, 2016
Posted on January 6, 2016I can't believe it has been so long since my last update! Honestly, with the ease of Facebook, logging on here is an extra step that I haven't had the time to take! Once we got home from Philly, not only did the stress an strain of caring for Jose take up an enormous amount of time, but juggling Charlie and home life and that comes with it seemed to occupy every minute. At least in Philly, we could concentrate on one thing...Jose. We are glad that all that is behind us and we continue to be amazed by Jose's recovery. The letter below will hopefully catch you up to date on all that has been happening. Without a doubt, 2015 was a hard year. However, your love, prayers and support helped make each day a little better. This letter was sent in our Christmas card. I wish I had a way to send each of you a personal note for all you have done and continue to do for our family. The outpouring of support from those we know and those we don't have been and continue to be such a blessing. Life with Jose continues to be a marathon. One we never could have prepared for. Thank you for running this race with us and for all you do to support our family.
Dear Friends and Family,
Truly, 2015 has been a year to celebrate miracles. At this point last year we knew Jose would be facing some pretty major surgery, but little did we know all that was to come.
The past year alone, Jose has spent approximately 83 days in the hospital. He has faced 9 operations plus, he has had an additional 6 procedures that required sedation and/or intubation. He has had to relearn how to eat and how to walk. He has fought a fierce battle with multiple infections. We know that his eyesight has been effected and we are still trying to determine the extent of the damage. He struggles with balance, tires easily and has lost control of bladder functions. And yet through it all, he has faced every obstacle with courage and determination. He still has his quirky sense of humor, contagious laugh, love of trains, eagerness to do well in school and possesses an overwhelming ability to never give up.
Charlie has amazed us with his knack for taking everything in stride. Traveling, living life in a hotel, being cared for by others – even strangers at times, crazy schedules and exposure to some pretty scary sights in hospital rooms didn’t seem to phase him. He has flourished! His language has exploded. He loves to say, “Me-self” - meaning I can do it myself! (And usually, he can!) He is curious, adventurous (making mommy and daddy quite nervous at times!), loves to sing, play on the playground and gives the best hugs of anyone I know. During some pretty dark days, he has brought us great gifts of comfort and joy.
Chris and I have been abundantly blessed by these two precious boys. We have learned more than anything this year that presence is greater than presents. Every day that we are able to share is a gift. You have all been part of sharing this journey with us. Your gifts of presence, prayers, meals, financial support and love mean so much. It is overwhelming and quite humbling. We are so grateful. You are part of our miracle. So this Christmas, we are celebrating miracles. The miracle of Christmas. The miracle of life. The miracle of family. The miracle of friends.
We love you.
Posted on March 8, 2015
Posted on March 8, 2015Jose has continued to run fevers and the infection markers in his blood have been rising. The area on his forehead also reopened and they were unable to close it with stitches in his room. (It is larger than a quarter.) Because of these difficulties, Jose required a 3rd surgery this morning. They clean out the wound on his head and found some additional infection around the temporal lobe of his skull. The infection washed out and some of the bone was removed. At this point his shunt does not appear to be compromised but they will continue to monitor him closely. He is a very sick little boy but hopefully this surgery today will help us get back on track to recovery. Thank you for your continued love, prayers and support.
Posted on March 6, 2015
Posted on March 6, 2015Sorry for the delay in updates. I realized that I had been updating the carepage and facebook, but not this site. So here is a quick run down. Jose developed an infection in his head and pneumonia. He had to have a second surgery on Monday, March 2. He has been on the ventilator since then and really having a difficult time. Here is the update from today... Hospital internet has not been so great and Charlie really needed me last night. We are so physically and emotionally drained its really even hard to focus to write. I am going to try. It may sound very clinical, but thats kind of where we are. Writing it all down may help me keep up with it better. Depending on which doctor you talk to, you get a different answer as to where we are. We think the overall trend is a slight improvement. Eyes- Still stitched shut but everyday they open them to do an exam. The abrasions are improving but not resolved. Doctor feels we definitely made the right decision to close them. Tummy- not where we want to be. However, his pee color is better and we are doing LOTS to help things move along. He seems uncomfortable there. We are trying to give him tiny bits of formula through his feeding tube. The kid is bound to be starving. Central Line in neck- Everything looks good there. No growth from cultures. Arterial Line- Replaced yesterday (move from foot to wrist) however it is very inconsistent with blood pressure readings. Muscles/Legs- He has Clonus which basically means when you try and flex his feet you get a series of spastic muscle contractions. He still has the drain in his right thigh from where they took facia to try and repair his head. White Blood Count- Trending down but still high (17 this morning) Lungs- Some slight improvement over yesterday. Still diminished on both sides. Left is worse than the right. He is not taking any breaths on his own over the ventilator. He gets IPV (intra pulmunary ventilation) every 2 hours. Basically, they shake up his lungs every 2 hours while giving breathing treatments through the vent. He was being treated with 3 antibiotics, Cephapime, Vancomyacin, and Flagyl. Typical treatment for pneumonia is 7 days of these medications. Yesterday was the 7th day. However, since he continues to run fever, they extended the Vancomyacin for another 48 hours. The Cephapime is being used to treat the infection in his head. He will be on that at least 4 weeks. Fever- spiked to over 103 at 11:30am Head- one of the drains stopped working so they removed it this morning. (so now he only has 3 in his head) There is some drainage that the infectious Disease docs are concerned about. Watching him closely. He will be having a CT Scan later this afternoon to look for any possible pockets of fluid (infection) that may have developed. However, the main sugeon, Dr. Taylor, thinks that his head is okay. The halo is still in place. Infections- pseudomonas (bacterial) and candida (fungal) - Will continue Cephapime and also added Fluconazole. The doctors consulted with Johns Hopkins yesterday to get there opinion on the treatment plan. They agreed. He is heavily sedated, but even with the sedation he needs extra help quite often to relax. We have a long way to go. Like I said earlier, I think we are headed in the right direction, its just going to take some time. Chris is leaving tomorrow. Sharon is still here. My dad is coming up tomorrow. Jose's teacher surprised us and is coming in tonight. That will get us through the weekend. Again, thank you Lauren and Barry and Alison for your help with Charlie. Thank you to Jose's teachers for the balloons, monkey and gift cards. Thank you to all of you for your ongoing love, support and prayers. Keep this train moving, Jose. Full speed ahead. All Aboard for Jose!