October 31, 2011 in Uncategorized with 11 Comments

As you are all well aware, Gray finished his last scheduled proton therapy treatment almost two weeks ago. We enjoyed (greatly enjoyed!!) one and a half days at home and then suddenly Gray began running a fever. By the standards of Gray’s health over the past year, his fever wasn’t really all that high but it was a fever nonetheless. Sunday evening, we called Gray’s doctors and they recommended that we bring him in. When we arrived in the Emergency Room, the nurses immediately took blood from Gray for testing. They knew Gray had to have some form of an infection but just weren’t sure what infection to treat. While they waited for Gray’s cultures to come back and identify the specific bacteria that had attacked Gray’s system, they chose an antibiotic at random and began giving it to Gray. They weren’t sure what they were dealing with yet but they knew they needed to treat it right away. As we sat in the ER, waiting for whatever was coming next, Gray began shaking violently. As his parents, we both thought Gray was having a seizure but the nurses assured us that Gray was only reacting to his high fever and suffering from chills. The shaking was very intense, though, and lasted for about 20 minutes. It was very scary. Soon, we were told that Gray would be admitted. We weren’t told how long it would last or even why we were being admitted but we were moved to a room right away. Gray’s cultures eventually showed that he had three different bacteria infecting his little body. All three bacteria are ones usually picked up during hospital stays so it’s no surprise that Gray has caught them. Having spent nearly the past year in a hospital bed, the doctors and nurses were actually surprised that Gray hadn’t contracted an infection much earlier. While we’re happy that Gray didn’t catch such a serious infection any earlier in his treatment, it’s really no consolation watching him go through it now. When we first found out about the three bacteria infecting Gray’s body, the doctors thought that they would treat him with antibiotics and then release us about five days later. Unfortunately, the antibiotics didn’t seem to be helping and instead of going home on the fifth day Gray was scheduled for an emergency surgery. We learned that with so much infection inside Gray’s body that his port had now become potentially harmful to him. When someone has a foreign object under their skin, bacteria tend to colonize around it and make curing the infection much more difficult. So, Saturday morning, Gray went into surgery and doctors removed Gray’s port. As we asked the many questions running through our minds, no one seemed to be able to give us a straight answer. It was growing increasingly frustrating to not really know what was going on in your son’s body. Finally, after Gray’s surgery we were informed that a group of infectious disease doctors were looking at Gray’s medical records and would hopefully be able to give us the answers we so desperately wanted very soon. Thankfully, the answer came…but to say it was comforting is simply not true. Finally, our physicians assistant came into Gray’s room and sat down with us to go over everything they had learned and where we would go from here. While some of the  news was good, some of it was devastating to say the least. The P.A. explained that when we initially brought Gray into the ER days earlier and he was given that “anonymous” antibiotic to treat an unknown infection, it actually caused those violent “shakes” we witnessed. Now, the P.A. explained that his shaking wasn’t actually a result of his high fever but was instead a convulsion, caused by the chosen antibiotic, attacking one of the specific bacteria in Gray’s body. Then the P.A. used a phrase that you don’t often hear in the medical community…the P.A. looked at us and said “It was an act of God!” Whoa! When you hear a doctor attributing a medical success story to God, or even a “miracle”, you know that God was protecting your baby boy and your family that night. You see, when the ER nurses “randomly chose” that antibiotic given to Gray they “accidentally” chose the ONE AND ONLY antibiotic that would attack the very rare bacteria that had invaded Gray’s system! Our stomach’s literally dropped. There’s no other reason for that to happen other then God’s hand to have been directing the nurses that night. We wanted to cry at what may have happened and we wanted to jump up and down in worship to our God, our protector and healer, all at the same time. The physician’s assistant went on to explain that had that one specific antibiotic not been chosen that Sunday night, Gray may have suffered great consequences…including the possibility of him no longer being with us. We can’t allow ourselves to dwell on that fact for too long. We simply rely on the truth that we DID in fact take Gray into the emergency room and we DID in fact place our baby boy in the hands of our God and in the end God took care of us and allowed us to keep our little man with us, here. Honestly, it’s very hard to even type this out. God has very big plans for Gray!

Now, we’re still  in the hospital a week after Gray was first admitted, and over the last week we have learned that Gray has contracted yet another bacteria. He now has a total of four bacteria infecting his body. The infectious disease doctors have recommended that Gray remain admitted for another 7-10 days while they treat the most dangerous bacteria and make sure that they are responded to the antibiotics that have been prescribed.  Right now, Gray is receiving a cocktail of different antibiotics and it’s taking its toll. Gray is cranky and often doesn’t feel well. When he does feel good, though, he feels VERY good and we see the Grayson we all know and love coming through! This morning, Gray went back into surgery to have a new PICC line placed in his arm. When we are released, home health will visit us and teach us how to administer Gray’s antibiotics through his PICC line. We are hoping that that comes sooner then later. The nurses actually came in today and told us that they’re already seeing signs that Gray’s multiple infections are responding to the antibiotics AND they have found a new antibiotic that might treat more then one of Gray’s infections at a time. If all works out, we may actually get to go home as early as tomorrow…but, at this point, we’re not getting our hopes up. This past week has been a roller coaster of emotion and we’ve gotten a change in diagnosis and treatment plan daily, if not more often then that. PLEASE PRAY for simply EVERYTHING!! We desperately want to go home. We NEED to go home. Please pray that Gray will continue to respond to all of his antibiotics and that the many bacteria attacking his little body will fade. Also, please pray for all of our emotional and physical states. Being in the hospital when it’s scheduled is one thing but having to return for an undetermined amount of time at random is an entirely different experience. The waiting, the worrying, the questions…it’s tiring and emotionally draining. We will continue to keep you posted on Gray’s progress fighting this current set back. Gray is so brave and such a trooper.

“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8