No More O2 Needed

Toby seems to be doing much better today. He does have an infection in his trach, so he will be on medication for that starting tomorrow. (They did a trach culture on Friday while at the ER). I shut off his O2 just a little while ago, and he's not needing it for right now, we will see how he does as the day goes on. Thank you for continuing to pray. 

Being Sick - Trip to the ER

Last night and today Toby is still needing lots of oxygen to keep his saturations up even when he's awake. We ended up taking him to the ER today because something just doesn't seem right. They did a head CT to see if it was his shunt, a chest x-ray, x-rays of his shunt and tubing to see if it was kinked. They took blood, etc., etc., etc., and he's fine. Nothing is showing up. The minute we shut off the O2, though , he desaturates and so the conclusion is that he has a virus, even though he has no runny nose or cough. We are back home now, and we will keep him on O2 through the weekend; if things still seem fishy, and he continues to act strange, we will pursue more with his shunt next week. Sometimes a shunt can be failing and it doesn't show up, even with all of the tests they did.

A New Night Nurse

Well, we interviewed the nurse last night and really liked her. The best part is the nights that we need her (Sun., Mon., and Wed.) are the nights she needs, so we don't have to move around our other night nurse (who we love!)

Toby has a bladder infection "sort of"...It's kind of hard to explain, but he had bacteria in there, but the count wasn't high enough to indicate an infection. They're still treating it with an antibiotic that is specific to just the urinary tract, so it doesn't kill off good bacteria in his body. Toby just isn't acting like himself, though. He's actually crying today (he never cries unless there's something wrong); he's serious (he's always smiling), and he just seems out of sorts. Please pray that we will have a clear picture of what it is - there are so many things to consider - respiratory problems, a cold, teeth, the shunt malfunctioning, among many other issues, so we will see what happens. Thank you again for always keeping us in your prayers and caring for us so much!

Odds and Ends

We might have a possibility of filling our night nurse position - we're hoping to interview her some time this week; we'll keep you updated. Toby also might have a bladder infection again (I'm about 95% positive he does). We took a sample today and they will test it; we should know by Wednesday. It frustrates me that he will be on yet another antibiotic, but this too is in God's hands.

Lastly, Bruce and I are starting the process of looking for our next place to call home. Please be in prayer as we search for a home that will incorporate Toby's mobility needs as he gets older. We're trying to take this into consideration, which obviously limits our choices, so your prayers with us on this would be wonderful. Some days I think that our search is hopeless, but I also hear God continuing to ask me to trust HIM. He will provide, and the only way that we will be able to explain it is that God did it and not us!

Neurosurgery

Toby's CT scan went well today; It looked great. Dr. Elton (our neurosurgeon) said we don't have to come back for 6 months (previously it has been 3 months). Toby did great for the CT - just looked around while he was strapped down. We had a night nurse last night, so we were able to get some much needed sleep. No word on a nurse yet for the other nights, so please keep praying! Have a wonderful day.

Again, I just want to thank you for continuing to lift up Nathan, Ivy, and Bradlen Olin in your prayers. His shunt surgery went well.

Finding a New Night Nurse

Please continue to pray for Bradlen Olin (Erika and Carl Weise's nephew) Here is the link to this web-site so you can stay up to date. Please sign their guestbook and let them know you are praying for them; they would love to hear from you!

www.caringbridge.org/visit/bradlen

Another prayer request for us is a new night nurse. Because of some circumstances surrounding the one night nurse we had, they have taken her off of the case, so now we only have a night nurse on Tuesdays and Thursdays. We are going to be pretty tired if they don't find a replacement soon, and unfortunately finding night nurses with pediatric vent. experience can be very difficult. I know God is always in control and He definitely answers prayers, so thank you for continuing to lift us up in prayer. I'm amazed at how the body of Christ works in supporting one another.

Planning for the Inevitable

Well, our trip to Florida was wonderful! We left on Tuesday and arrived back home about 3:30 a.m. this morning. We were able to relax, Bruce and Carl golfed, we swam, saw an alligator in the Everglades, and did all kinds of wonderful things. Our hotel was right on the beach, and the weather was beautiful; I even squeezed in a run on a path by the beach, which was beautiful!!

God taught me a very valuable lesson while we were gone. When we arrived at the airport on Tuesday night I called home to say we had arrived and learned that from 7:30 p.m.-10:30 p.m. there was no electricity at our house. Before we left, I had planned for every scenario, even made a video for all of the nurses showing them how to take care of Toby, but had forgotten to think this one through. It was chaotic, the back-up battery wasn't charged, we didn't have flashlights in the house, and in the end they had to call 911. Toby was GREAT; they DIDN'T call 911 because Toby was in distress, they just needed power for the ventilator, and our generator wasn't working right. Martha and Brenda (two friends from our church) along with our neighbor and my mom problem solved and worked through it all. The Hilliard EMT and Fire were here, and provided light and generator power. This situation was EXTREMELY humbling for me. I felt like I had planned out everything, and then felt so incompetent because we didn't even have flashlights, the back-up power source for the ventilator wasn't charged, etc., etc., etc., (our power never goes out by the way). I hate asking for help, and then not only were people volunteering to take care of Toby, they were experiencing major stress while doing it. There is no way I can ever repay that. Finally, God spoke in the middle of my tirade of berating myself and questioning why God allowed this to happen. He said, because "I'm in control, STILL! You couldn't be there because you would have been able to control all of it, and intervened because you know where things are and how to move Toby, etc. Everything would have been fine, but you still need to remember to trust me, and allow me to be in control, so you had to be in Florida and learn to trust from a distance." So, then I had to stop and think about the ways He provided in this situation, and there are too many to list on the web-site today, but He did. I learned a very valuable lesson - go and buy flashlights for each room in the house, and that God is still in control -always is, even when I think that I am. Thank you, God. I am humbled by all of the help we had while we were away, something I can never repay, but I can still say thank you. So, thank you - Martha, Brenda, Erika, Jeannette, Paula, Mom, Toni, Aliena, Mareta, Lyndi, Tom, Mom & Dad Holt, and Hilliard EMS and Fire. Thank you for praying while we were away too!!