On June 27th, Owen will have a g-tube placed as well as a brain MRI, muscle biopsy, and skin biopsy. The g-tube, for those who do not know, is a feeding tube to help support Owen's nutrition and provide another option for dispensing his many, many medications. We have strongly opposed placing a feeding tube in Owen since it was first suggested at 2 months old. Our reasoning in the early months of his life were based on the information we were given that Owen would only live for a very short amount of time. Owen has shown to us over the past 21 months that he has a lot of fight in him and isn't going anywhere anytime soon. We now view the feeding tube as a comfort measure as opposed to a life extending procedure. Owen is very thin. He does not eat enough by mouth each day to support a proper level of nutrition. When he is sick (which is often) he does not eat and we are unable to get his medication into his body. For these reasons, it is necessary to have another option to feed and care for Owen. Pete and I made this decision many months ago, but decided to wait until we had the results from the genetic testing back before moving forward with any surgeries. We were hopeful that our decision would not be a blind one- we were hopeful that we would have a diagnosis with some idea of life expectations and disease process to help guide us. This is not the case- at age 21 months, we know the same amount of information about Owen and what is wrong as we did at age 2 months.
Owen has not had a brain MRI since May 2012. The initial plan was to do MRIs every 6 months to monitor the changes in the white and grey matter of Owen's brain. Is it changing, increasing, decreasing, ect? Owen has to be sedated for the MRI because it is essential that he remain still during the imaging. Owen's airway is no longer is stable enough for safe use of IV sedation and therefore we have been unable to do a MRI for over a year now (we would not electively have Owen undergo general anesthesia for only a MRI). Pete and I are very interested to compare this new MRI to his previous ones. The MRI is really the only piece of information we have ever received about Owen that has provided a clue about his illness.
The muscle biopsy will be to rule out mitochondrial diseases and the skin biopsy will be to store more skin cells of Owen's for future testing as needed. Owen will be admitted to the PICU post surgery and his breathing tube will be remove there as opposed to in the recovery room of the OR. There is concern about being able to safely remove the breathing tube and it may take a bit of time for it to happen. Pete and I are obviously very concerned about this, but I also know that Owen has always proved my worries wrong. I wouldn't be even slightly surprised if they were able to remove it in a very routine fashion and Owen would be heading home with us the same day. With Owen...you never know...
The past month has been a trial of ups and downs with Owen. He was put on a medication that he did not react well to. We had about two weeks of screaming and arching of his body before we were able to figure out what was happening. It was rough. Immediately after that struggle, he came down with a cold. For the past two weeks he has sounded very congested in his chest and struggles to breath. We are doing the nebulizer three times a day with him, chest PT, and trying to keep him in an upright position as much as possible. The good news is this congestion is all in his chest and not his lungs.
Owen is just such an interesting guy. Each day presents differently and you never know which version of Owen will be with you when you wake up in the morning. Yesterday was one of my favorite versions of my little boy. He was awake from 10am until he got his sleep medications at 9pm. His whole day was alert, calm, and peaceful. He still struggled with congestion and breathing, but he didn't let that dampen his spirits. We went for a walk around town, swung on the swing set, and played. If only every day would be like yesterday it would be a great life for Owen.
Owen will now have his pre-op appointment on June 17th. We will also meet with GI and his neurologist on that day. I will post an update after those appointments.
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| A bit hard to see, but Owen has been wearing his Oklahoma hoodie to support those he loves in Moore, Ok. Thankfully, our friends that we love made it through the tornado safely, but their community will be forever changed. Our prayers include love, hope, and healing to that area every day. |
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| My handsome, silly red-head |
