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.

Getting ready to Come Home

Toby had his car seat test today. He had to sit in his car seat for one hour to see how he would tolerate it. He did great! (slept most of the time!) Bruce is doing his 24-hour care right now. We received our first shipment of supplies, and Erika and I organized them tonight, figured out what we are missing, etc. It was really good to get that completed. We are still in need of a night nurse; the other one we interviewed hasn't called them back about ventilator training, so we're interviewing another nurse Saturday night at 7:00 p.m.. Please pray that God will give us wisdom with this decision. My parents are coming to take the boys back home with them to Michigan on Sunday. They will just be gone until Thursday to give us a few days to get Toby settled and into a routine of sorts. It's going to be really hard to have them away AGAIN; I'm just ready for our family to be all together, but it's for the best, and Thursday will come very quickly.

Bruce's 24-hour care went well, again not a lot of sleep, but he did great. Conor and I went up to visit Toby today and to see the eye doctor. They're pleased with the results of his surgery, he will still need glasses because he is farsighted. However, he is using both of his eyes to look at things, whereas before he was only using one eye, so this is great! :) We will interview the night nurse here shortly. The boys are leaving for Michigan tomorrow; I'm really going to miss them a lot.

24 Hour Care

The 24-hour care went really well. Although, I didn't get much sleep - really glad that we're going to have a nurse at night. Toby weighed 9 lbs. 4 oz. today! We're still on track to come home on Monday, but they're having difficulty scheduling training for our 2 nurses, so please pray that this happens by Monday. They have been doing some tests on Toby just to make sure his electrolyte levels and blood gases are good - all have come back normal!! :) We have A LOT to do before Toby comes home, feeling a little bit overwhelmed by the phone calls, organizing, cleaning, etc. that need to be done before Monday. I know that everything will work out well. Thank you for praying for us!

Sleeping Too Well!

Toby had a good night, slept really well. Actually I guess he slept too well because they were afraid his shunt was malfunctioning so they did an x-ray and then a CT scan this morning. (one sign of shunt malfunction is unable to waken the baby - sleeping too much). Bruce said his fontanels felt soft, but I guess they just wanted to be safe. We will have the results today. Please pray that nothing prolongs our hospital stay.

The CT scan came back normal; his shunt seems to be working just fine. I begin my 24-hour care tomorrow at 1:30 p.m. until Thursday at the same time. The other two boys are doing well, but the next few days will be hard because mommy won't be around. We've had a few childcare changes because of sickness, and God continues to provide friends to take care of Conor & Garrett. Thursday afternoon we will get some more of our equipment. Bruce will do his 24-hour care Friday to Saturday. Pray that we will be well rested Saturday night and Sunday night as we bring him home on Monday.

Discharge Date - March 19th

Well, we have our nurses - and we have a discharge date - next Monday, March 19th!! It's amazing - I'm scared and excited all at the same time. We have so much to do this week, more training, the nurses will need to get trained, more equipment delivery, etc. My brain is just spinning out of control right now with all the things that need to get done, but it will get done; I'm leaving it in God's hands and just trusting Him one day at a time!! :) So excited to get him home - Carrie