Conor's Eye Surgery

Conor's eye surgery went pretty well today. He was great going in - didn't cry when we left him. Afterwards he was pretty upset - screaming actually. He still hasn't opened his eyes all the way - he had wet washcloth on them right before nap time and then finally put on the sunglasses they gave him. Then he fell asleep with the glasses on and he's still sleeping. Hopefully his eyes will be feeling better soon.

Toby is doing well also. We are interviewing a day nurse and a night nurse this Friday night and Saturday afternoon, so please pray that we have wisdom if these are the nurses that will be right for us and Toby. I'm nervous about this whole process, but know that it will be okay. Carl & Erika have been a huge help in this area.

Nursing Care and Waiting

Not much to say, Toby is doing really well. The tests for calcium in his urine came back fine. He weighed 8 lbs. 8 oz. and was close to 21 inches today. Our insurance approved 16 hours a day of nursing care, so now they are trying to find the nurses. If we had our equipment and nurses we could bring him home, it's just a matter of logistics now. I guess they have 2 or 3 other patients on trachs and vents that are also going home, which "clogs the system" if you will. Some days I really want him home, and other days I feel very overwhelmed with it...having a stranger in our home, helping us with Toby....Please continue to pray that we will have good nurses that will fit in with our family and be trustworthy. "Now to him that is able to do exceedingly abundantly above all that we ask or think according to the power that worketh in us. Unto him be glory in the church by Christ Jesus throughout all ages, world without end, Amen. (Ephesians 3:20-21)

Gaining Weight

Toby continues to do well. He is growing - up to 8 lbs. 6 oz.!! :) We're mostly just waiting to get our equipment and some nursing help before we come home, so that is what is taking the most time. My grandparents arrived safely today from Michigan, and they have been such a huge help already! :) It's great to have them here.

The Boys are Home from Michigan

The boys came back yesterday (Sat), and it's good to have them home. We (my parents and the boys) went up to see Toby. It's the first time the boys have seen him since he went into the hospital Jan. 15th. I think it was very good for them. Toby continues to do well, and is getting 12 breaths through the vent, but no oxygen. They also adjusted his food so he can be off of it for 6 hours total a day. We'll divide it up into 3 hour segments (3 hours in the a.m.) and 3 hours at night. We just continue to wait for the case managers to set up a nurse coming to the house to help take care of him before we are able to go home. Some days I'm overwhelmed with the thought of bringing him home, and then I just remember again - one day at a time. God is in control, I don't have to be.

OT and PT

Toby continues to do well. His color is good, and the Occupational & Physical Therapists are impressed by his ability to move his legs and feet, and how strong his arms are. He tries to lift up his head and can grasp things with his fingers as well as follow something with this eyes. They did insert a foley catheter today to collect his urine for 24 hours. The renal (kidney) ultrasound showed some build up of calcium in his bladder, so they just want to double check it. They didn't seem overly concerned about it. I added some new photos today. He weighs about 8 pounds! :) Yeah! Oh yes, Conor's eye surgery is this Wed. Feb. 28th

Eight Pounds and Conor's Eye Surgery

Toby had a good day. They threaded the smaller tube into his jejunum (small intestine), through the g-tube (larger tube in his stomach). He seems very content on the ventilator. He's sleeping well, and I believe weighs about 8 pounds. He even had a massage today from a therapist. She even taught me some things to do to soothe him. We're learning more and more about his care, and it's going well. I feel very comfortable suctioning out his trach, and Bruce and I have both been practicing quite a bit. They continue to work on coordinating his care at home. So, we wait! :) The boys come home on Saturday, which we can't wait. We miss them very much. Conor also has eye surgery to move the muscles outwards, since he crosses them even with his glasses. It's at Children's - outpatient, but pray for him. This is my child that can't stand to have his blood pressure taken!! :) I don't think he's going to do well with no food after midnight until surgery. I know God will help all of us through that also. Have a good night!

Long Talk With Pulmonary

The pulmonologists did a comprehensive review of Toby's history today. They feel that he should be on the ventilator at all times. Their concern is that he isn't stable enough to maintain his breathing, and then just normal things like growth while switching back and forth between the ventilator and the mist collar. The one doctor mentioned that he has really sporadic breathing and sometimes is only taking shallow breaths. A chest x-ray today showed that his lungs aren't getting a full volume of air, which can put him at risk for pneumonia. She asked what would happen if he got a cold. They don't want him so close to the edge that a cold would put his health at great risk. They believe full time ventilator support is the best option. They also decided to put his food into his intestine to further take away the risk of aspirating into his lungs. The sleep study results came back and basically didn't explain anything we didn't already know. It was difficult to hear this from the doctors, but I understand and am confident this is the right thing. We don't want to bring Toby home and end up right back in the hospital. Honestly I was there all day and switching back and forth from mist collar to vent and back again was annoying. I would rock him to sleep and then have to put him right back into bed to get the ventilator hooked up again. Having some consistency will be good for him and for us as we make plans to bring him home. I don't want to be on edge constantly to see if he's breathing. That would be very stressful. God is good, and will continue to provide all we need to take care of him.