Thirty Days and Waiting

The rollercoaster continued today. Although Otto’s spirits were a little more upward, we started a new eating plan today (or should we say a no eating plan). Yesterday, late in the afternoon, it was discovered that Otto has an infection starting to form in his intestines.  In order for it to heal, he cannot take any food or liquid by mouth for the next few days. Everything, including a 24 hour nutrition drip, needs to go through his line. One would think that something like this would put you over the edge. Otto’s response?  “Well, if this is what it takes to get rid of this, then this is what I have to do.”  We are in constant awe of his strength and courage. Now, we have currently talked to the team in regards to the fungus that has developed on his liver, and the best chances of erraticating it is through surgery. So, once his counts and high enough and considered safe, the pediatric surgical team will remove it. More discussions will take place in the next day or so...

   Today has been a very uplifting one so far. An initial pathology report came back in regards to the liver biopsy. The growth on the liver looks to be fungal. There was no disease present in the slides. We are over the moon happy to know we finally have something to point to related to the fever he has been having. We will meet with the team in a few hours to discuss the three to four antifungal meds he will need to take in order to clear the infection and keep it from coming back.     This has been a long week at the hospital, and we could not be able to do the things we needed to without the help and support of family and friends. Thank you to you all as we work to get our guy back to the chipper boy he is! Mark, Leigh, Otto, Tess and Lulu

Otto has been having an ok day today. His fevers still persist and eating is a challenge. We had some further testing today completed that showed there is something growing on his liver. He will go in for a biopsy tomorrow to determine what is causing this growth. It could be an infection or it could be AML reared. As for now, we pray that this is something that can be treated with antibiotics or anitfungals. Prayers and positivity! Mark, Leigh, Otto, Tess and Lulu

We are still here hanging at Yale.  Otto has had a rough last 2 days.  There have been a few different issues popping up.  One of the things that we are noticing is that he has high blood pressure.  Due to this, there have been a few ultrasounds completed.  The results have come back indicating that his liver, abdomen and kidneys are functioning just fine.  We think we have a better idea of what it could be.  Meds have been given and we are waiting to see how he reacts to them.  Currently, his blood pressure is making its way back to normal (which is a great thing).  He continues to have fevers, but the Tylenol helps to fight them. Yesterday, there were a few great things that happened.  We received a gift of holy water from my aunt's dear friend.  She went to Ireland and sent it to us.  It was a very sweet and thoughtful gift and is much appreciated.  Secondly, we were visited by a gentlemen whose son created a charity...

  Late yesterday afternoon, we were asked to bring Otto to Yale to be admitted. Earlier that day, we noticed a small rash developing behind his ear. We took pictures and sent them to the doctor. It looked as if he was developing Chicken Pox or Shingles. We were in a bit of a panic. As Otto was being admitted, he started again with a fever. Tests were completed and today we found out that he doesn’t have either. So now, it looks like he just has a low grade fever. We are very thankful that the tests came back negative. Unfortunately, now that he has a fever, he needs to be fever free with no growth on blood cultures for 48 hours and an ANC of 200+. This will most likely take us about 10 days to meet all the conditions in order to leave.   Saying prayers for a quick recovery!   Mark, Leigh, Otto, Tess and Lulu

Yesterday was a bit longer than we had expected.  At first, the doctors were ready to send Otto home, but after discussion, decided to keep him a little longer for one more transfusion of platelets.  In our minds, we were going to be home by noon.  The blood bank, however, had a different plan.  They were holding all platelets until they could make sure they wouldn't have a potential shortage for the day.  So, he wasn't able to receive them until 12 noon.  Thankfully, we made it back to the house in time to get the littlest one off the bus.  Although it was a frustrating day for Otto, he made the best of it. Today we are looking forward to meeting up with Otto's tutor.  He really enjoys working with her.  Other than that, we are praying for a low key day.  Our next trip to Yale is scheduled for Friday for a counts check and possible transfusions.  We wanted to send out a special thank you to who left the Padre Pio candle in our ...

Hi everyone,   Otto has been doing well this weekend. We came to Clinic last minute to check on a bruise he developed on his hand. Turns out his platelets were extremely low along with his hemoglobin. Both levels were too low to go home and return in the morning. So, instead, we are spending the night at Yale while he gets transfused throughout the night. Good news is we will be able to go home tomorrow morning.  Praying for a smooth night! Mark, Leigh, Otto, Tess, and Lulu