We've come to a fork in the road... As many of you know, we have been working on lowering Sophia's need for the vent. The ventilator is assisting Sophia in her breathing. Last week we were able to get Sophia on the lowest vent setting allowing her to be doing most of the breathing work on her own. Tuesday and Wednesday this week, they tried taking the vent pressure support away. That would keep her on CPAP only. Tuesday she only lasted 25 minutes off of the support. Wednesday, under better circumstances, she lasted about two hours off of support. Once I got ready to do her care, she started to DSTAT a little on me and then could not settle back into a good breathing rhythm so they added back the pressure support. Yesterday we sat down with all the doctors in a Care Conference to discuss Sophia's status, goals, needs, etc. I began the meeting by asking if the trach was suppose to fix her airway issues, then why is she continuing to need support?? Their response, was one of a few things, of course there is no definite answers ever in Sophia illness because her condition is so rare and TIME is the best answer they have. They mentioned that given her cranial nerve damage, swallowing issues, and her heart condition may be adding the continual breathing complications. There suggestion was that at this time, is it still important to keep pushing her and weening her off the vent or is it time to help her with her breathing and start focusing on her development. GOOD POINT DOC. After her surgery, it has been my growing concern, that now if the breathing is "fixed" then it is time to start allowing Sophie to be a baby! The doctors also made a good point in saying we can continue to work on vent rates, but Sophia can not lay in a bed all her life. She has to be able to sustain her breathing and be a baby. So, we have come to the decision that we are going to be making a move. We are going to continue to support Sophia on the vent allowing her to be comfortable in her breathing until she tells us it is time to make a change in that again. We are also switching the focus now on her development. She is already two months behind from being in the hospital and having 5 surgeries. She is also going to continue to be delayed due to her condition. Again. CHARGE is one of the most complicated syndromes today and it is the only condition that causes so many complex medical conditions. CHARGE babies (people) are the only group of people that have so many and complex sensory losses and disorders as well. Sophia will also struggle in her development because she is/ may be partially blind/deaf. DEEP BREATH and breathe. It is still so hard for me to just vocalize her conditions because I know the level of care and needs she is going to have daily. So we are switching our focus on her development. We are going to start NOW at getting her involved with different therapies and specialists in order to give her the best chance possible and to stimulate and meet her growing needs. First and for most, she is a baby and needs to be that. Second, it is important that we involve these therapies given we do not know the extent of her needs yet but know there is a need. Lastly, we have to let Sophia be Sophia without limitations and we have to wait and she what is truly capable of doing.
So we are making the move, literally... Today we are planning to move Sophie to the Infant ICU at Riley. At the ICU, the focus on development and letting a baby be a baby. They also focus a lot on parent care and getting us ready for home. Here is the kicker, a limited stay at the Infant ICU is 6-8 weeks. Oh it gets better... also because Sophie will continue to be on a ventilator (until she grows and strengthens her airway on her own) once we come home she cannot be switched to the home vent system until she is 10lbs in weight. Ok, Sophia is just now 8lbs 7 oz. She was born 6 lbs 12 oz. It took her 2 whole months to gain just under 2lbs. So given the minimum stay in the ICU and the weight requirements are stay at Riley has just been extended for months....months. :/ Another perk about the ICU, is that is allows 24 visitations for John and I. We can also have one parent sleep by her bed at nights when we need. We are allowed FOOD in the room and there is a TV. Oh the little things in life I tell you what!!! So we are at a catch 22, a stand still if you will. We have decided to control her breathing comforts and allow Sophie to grow and strengthen her airway on her own while allowing her to grow and develop in other ways as a baby should. The benefits are great...Sophia gets to be a baby! The downfall, we have a baby on a ventilator (life-support) its just heartbreaking. Its saving her life, but its heartbreaking at the same time.
On a side note, John and I have been taking the classes and learning her care. Today that care has been made a little more intense by remaining on a vent. Sophia will come home on a vent and require 24 hr care and monitoring. IF, big IF, John and I need to travel with Sophie I will be required to carry a vent machine, a suction machine, an emergency resuscitator, an emergency bag with trachs, tubes, gauze etc, and oh yeah I have to carry a BABY!!!! Let just say John and I will never be going anywhere again, or at least never again fast. It still so difficult to wrap our minds around our new lives and new normal...and really it hasn't even began yet. Staying in the hospital for months on end is the easy part, really! Home is going to be scary...at home we are on our own. Good thing we have several more months to prepare! But for today, we will focus on our move and our new goals of getting Sophia everything she needs to be a happy, healthy baby girl!
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