I 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.
Jose 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.
Sorry 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!
After a horrible night and a really rough morning /midafternoon, Jose was finally able to get some rest. He went without pain meds, fluids or any other medications for nearly 7 hours because his last remaining IV stopped working. He was poked, prodded and stuck 7 times trying to regain access through his veins but no one had any luck. A special type of IV was finally placed by the doctors in his groin. His breathing is better, the fever is down but not gone. The air in his head is getting worse. He will have surgery tomorrow to try and repair this issue. The doctor is confident but I am very concerned. It is so difficult to see you child in pain and suffering, especially when you are completely helpless to fix it. We are all weary and need your continued prayers. FYI, Chris was supposed to fly back to Atlanta tomorrow, but was able to change his flight to tuesday. We had hoped Jose would be getting out of the hospital early on in the week, but that is obviously not happening. It's going to make juggling both boys this week pretty challenging. It's also going to be hard for Chris not be here.
Yesterday was crazy. Sorry I wasn't able to send an update last night. It took a long time to get him comfortable but once we did, he had a few moments where he was with it and somewhat interactive. I was able to sit him up in my lap for a few minutes. He did have a few drops of sweet tea and a couple of tiny bites of applesauce. We were even able to take him off the oxygen for about an hour. We celebrate every small improvement! We are still battling the fever and there has not been much improvement with the air in his head. I stayed the night last night. He had 2 good hours of rest. Other than that, his fever was high, he was pretty agitated and we struggled with breathing on and off. In fact things got down right scary this morning in regards to his breathing. (Sats in the 70s and 80s while on 20L at 100%). When he is struggling to breathe his head inflates and deflates like a balloon...it is very hard to watch. I am usually pretty solid in dealing with Jose and all the medical stuff, but this really bothers me. It took about an hour, but he has settled down and is resting very comfortably at the moment. He is on quite the cocktail of meds....3 iv antibiotics (flagyl, vancomycin and cefepime) oxycodone, dilaudid, ativan, benadryl, tylenol and motrin. Hoping these really kick in today and he perks up a bit more. Thank you for your continued love, support and prayers. They help carry through these long and difficult days.
Well, it was not a good night or morning. Chris had to stand by Jose's bed all night long to try to keep him calm. Extreme itching, lots of pain, dehydrated, fever back to 103, heart rate stayed in the 170s, now a bit of pneumonia. The biggest problem is the air leak in his head. I mentioned something about this after the surgery, in that we were seeing his eyes puff up with each inhalation. With the swelling we are not seeing it in his eyes, but now it is in his forehead. Dr. Taylor had put a graph in the area between his nose and cranium but it doesn't seem to be sealing. This is a concern because air is not clean and the last thing Jose needs is an infection due to unclean air being trapped in his head. Dr. Taylor himself came this morning (a huge deal since it's the weekend ) and tried several things to help. It was pretty traumatic for me and painful for Jose. The things he tried did not work. He is going to give Jose until tomorrow night to see if he is able to heal this on his own. If not, he will need another operation on Monday. We REALLY don't want that to happen. We are trying a new concoction for pain management and giving him Ativan to help with the itching and to take the edge off. Increased fluids, more aggressive with breathing treatments and even though he is completely out of it, we are going to try and sit him in a chair to help him breath better. (PT is devising a plan for this.) Dr. Taylor assures me that nothing we do pain, breathing or movement wise will have a negative impact on the issue with his head. This is tough friends. Very tough.
On a scale of 1 to 10, if yesterday was a 3, today was a 4.5. He has had a few good moments today where he was responsive and even said Hi! He had a pretty good morning but really rough afternoon /evening. Keeping his pain under control is a challenge and his fever went back up to the 102-103 range...not good. The swelling has definitely increased and it is hard for him to see. His breathing is much better but he still needs the oxygen. He has been able to swallow a few sips of water today and we were able to start his formula through his gtube tonight (that should have happened much earlier in the day...don't get me started on that!). He has been pretty itchy from the morphine so we are hoping to get him off of that and onto something else tomorrow. Chris is taking the night shift again and we are all hoping for some much needed rest. Thank you for your continued support and prayers.
Jose had a pretty good night. His vitals are much better and while he is still requiring continuous oxygen support, we were just able to turn down the concentration level. They have unpacked and repacked the dressing and that went surprisingly smooth. They also removed the dressing from his head. This halo is something else! His fever is down to 100.5. We think he might be itchy from the morophine so we have given him something to help with that. He is still pretty out of it. Because he is at such a high risk for needing to have the breathing tube put back in, he is not able to eat or drink anything right now. Hopefully today we can start giving him a slow rate of feed through his g-tube and maybe a few sips of water. We shall see. I am optimistic about today, I think we are in a much better place...thanks be to God!
All things considered, Jose is doing pretty well. He is requiring continuous oxygen support and we are trying to stay ahead of the pain. He is running a slight fever, but that is to be expected post-op. He had a CT and everything looked okay. The air escape into his eyes and forehead is improving but not resolved. So far blood levels look good and he has not needed any additional blood since the surgery. Today's goals are stay ahead of the pain and keep him comfortable. He is still pretty out of it and for that I am grateful. Thank you for your continued support!
The surgeon was pleased with how things went today. The surgery lasted about 8 hours. He had a substantial amount of bleeding and requied 1600cc's of blood. However, he was able to come off the ventilator and is only requiring occasional oxygen support. There were many challenges and the surgeons said this was by far one of the most complicated cases they have done. There were tears in the dura which caused CSF leaks, but these were able to be repaired. The sides of the skull had to have titanium mesh plates put over the bone to stabilize and reinforce the structure in order to hold up the halo. The surgeon assures me these will be able to be removed when the halo comes off. The forehead was advanced 8 milimeters. The midface and upper jaw will be moved 20+ milimeters over the course of the next few weeks. The swelling will be pretty severe over the next couple of days. Most likely his eyes will be completely swollen shut which will be quite scary for him, I'm sure. We are somewhat concerned about how he is taking in air. It seems as though some air may be escaping from the airway through the sinuses, into the eyes and up into his forehead. We are watching this closely for possible problems with inner cranial pressure. For now, he is still pretty out of it but he is stable. The next few days are going to be very difficult with the swelling, pain management and helping him adjust to this crazy halo device on his head and across his face. Thank you for your continued love, support and prayers.