Getting better

Things are going much better right now. We've had a lot of help, and we're starting to get into a routine, and adjust. Toby still doesn't seem totally like himself, but he seems to be a little bit better. The interview went well today with the lady for the Medicaid Homecare waiver. Thank you for continuing to surround us in prayer. We have our first doctor's appointment on Monday with the neurosurgeon. They'll do a head CT to check the shunt - pretty routine. Pray for us as we attempt to get him out of the house with all of the equipment, and make it to the hospital by 9:00 a.m.! :) It should be exciting to say the least! I am looking forward to it, though. My sister is taking the boys overnight on Friday, and Erika will come to be with Toby, so Bruce and I can go out. We'll also have a nurse Sat. morning, so we can do some errands or just a few things around the house. Looking forward to having "normal" plans this weekend.

Adjustments

We are doing okay. The weekend was pretty good, but it has been a huge adjustment. It's difficult because all we do is take care of the children. Bruce and I are feeling stressed and a little out of touch with each other. Garrett has been majorly jealous and acting out. I would say that this period right now has been very difficult. Tomorrow morning a lady is coming to see if we will qualify for the Medicaid Homecare waiver. This would cover our in home nursing care if our insurance decides to stop praying. Pray that we will be accepted the first time, and won't go through the stress of a hearing to appeal the decision.

Ready for a New Normal

Toby seems to be doing much better. We actually got a decent night's sleep last night. It has indeed been a rough week - Bruce and I are ready for some sort of normalcy, routine - for a new normal. Sometimes the weight of taking care of Toby medically is so overwhelming, and on top of that caring for the other 2 boys. By the end of the week, I was ready to quit..., but again God gave me strength anew to go on and encouragement through many of you. The nice weather we are having is helping tremendously, knowing the spring does again come again after a "winter" season.

Toby's First Virus at Home

Toby has had several desaturations in his oxygen level, and so we're suspecting some cold/infection. The doctor has put him on some antibiotics. We're doing all we can with medication and other methods to get the junk out of his lungs. It seems to be working. It's been a very busy first day with the boys here and Toby being ill. One time Toby's alarm went off and Conor said, "It's okay, mom the nurse will get it...!" Bruce's mom is here and has helped out so much - I really needed her today. The last few days have been rough. I'm not getting a lot of sleep at all. The night nurse came once, and it's going to take awhile to adjust to having someone in our house at night. She will do Mon./Wed., and we're interviewing another night nurse for Tues/Thursday on Monday evening. I am exhausted. We do NOT want to have to go back to the hospital. Pray Toby gets better quickly.

Adjustments

We had some friends visit today, and ventured to take Toby from his room to the living room. He liked the swing - fell asleep in it!! We're still adjusting to having him home; things like how often to suction, the temperature of his heater so he doesn't get a lot of condensation in the vent tubing, etc. He has a small fever today, and has been wheezing a bit; We gave hime albuterol to help with this. Please pray that he doesn't have an infection. I don't want to go back to the hospital so quickly. Our night nurse is coming tonight for the first time. We're praying that we work well together with her. She would do 3 nights, and then another nurse we haven't met yet would do 2-3 nights.

First Night at Home

Toby had a good night, he only woke up once, but mommy and daddy were up quite a bit. We definitely need a night nurse, and (yay!) it looks like we have one for at least 3 nights a week. She is one that we had previously interviewed for nights. Hopefully we can find one for the other 2 or 3 nights that we would want one.

Toby had another good day at home. I have to say it again, but we love our nurse. She is excellent, flexible, and good at what she does. I am so thankful. We are also thankful to all of our dear family and friends that have been there for us, I am overwhelmed to the point of tears when I think of the love, prayers, and support we have received through this journey . The staff person at the patient information desk at Children's Hospital said to me the day we left, that she has never seen a church that has supported a family like our church has (Thanks to God for allowing Him to use you in this way - what a testimony to her and other hospital staff). She was amazed at the congregation we have. Toby was hardly ever alone, someone was always with him (besides a few hours here and there over the entire 2 month stay!) Even his last night we thought that we would need to leave him Sunday night so we could get some rest, and again totally God providing, a lady from our church called Erika and asked if she could spend the night!!! Amazing! Words cannot express how much we have needed our family, friends, and church family, and how thankful we are for all of you. May God bless you in ways we cannot fathom. I continually return to the verse in Psalms that says, "God has done great things for us, and we are filled with joy!" We know this journey is just beginning with having a special needs' child, but God is good and will continue to take care of us and give us strength, in good times and in bad. Thank you!

 
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Home for the First Time in Months

Toby is home! The transition is going smoothly - we love our day nurse. We still do not have a night nurse, so please pray that God will provide one. We're doing well, Bruce even went to work for a little while! :)

The day went well for us. Toby is in bed and sleeping - hopefully we will have a good night with him. His care certainly takes a lot of time; it's good that the other two boys are in Michigan, to give us time to adjust. He seems happy to be home, had a fun ride home in the ambulance. One of our favorite nurses from the hospital and a respiratory therapist came with us to watch over him. It was nice for us to have them come and see where Toby lives. God has been so good to us. We are glad to be home.