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.

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

God Answers Prayers

Toby continues to do well - his little cheeks are getting chubby - I will try to take some photos this week and post some new ones. Tomorrow I'm going to try to press the doctors for a discharge date. The other interview with the night nurse went well, so I think if they want to work with us, we may have our nurses in place! :) Yeah! God continues to answer prayers - He is so good (which the meaning of Toby's name reminds me of daily). We are embarking on our busy week and so many are helping us out - thank you!! Hopefully we will be home soon.

Mommy's Getting Sick

The interview with the nurse went really well. We interview a night nurse today at 3:00 p.m. Toby is doing well, but his mommy is not doing so well - I'm trying to get sick - wondering if I might have strep also. I've been exhausted, so last night I went to bed at 7:30 p.m. I haven't seen our little guy since Thursday, and I miss him very much, but I just don't know if I have the energy to go up to the hospital right now. Mom left today, so we will be relying on many friends and Bruce's parents to help us with the boys this week. Please pray I get well soon, and that the boys don't catch whatever I have.

Moving in the Right Direction

God continues to give us strength through each day. Toby is doing well - he does have a little bit of an infection around his g-tube site, so hopefully that will get better soon. They did an x-ray of his tummy today because it was distended and it showed a lot of gas! Those of you that have been with him know this to be true, he's a very gassy baby (loud too - fits right in with his brothers)...We do all the things we can for him - gas drops, and ferrell bags (these are used to vent his g-tube). Yesterday we received more of our equipment, and went through some more information on the vent tonight. I was able to get away a little bit today and have lunch with an author and speaker that is doing a conference at our church this weekend, and also speaking to our moms group, which I help coordinate. It was a nice reprieve from everything. Conor's eyes continue to look great - except two days ago he broke his glasses!!!! He's getting new ones tomorrow. We interview the nurse at 3:00 p.m. on Friday - we hope this is it, so we can move along and get him home. I just have to say thank you again - I am overwhelmed at times by the giving of so many people, and it's extremely humbling. The encouraging cards, guestbook entries, e-mails lift us up and we read each and every one. Thank you - Good night! :)

Coordinating Care

The training went well yesterday on the ventilator, and today we have more training with the pulse oximeter and the suction machine. We also have another interview for a day nurse on Friday at 3:00 p.m. Toby is doing well - he has some redness around his g-tube site, so pray that it doesn't get infected. I am feeling a little bit overwhelmed right now as we look to next week; we're going to need friends to help take care of the boys, as we don't have any family that can come to help. Bruce and I will also need to take care of Toby for 24 hours on our own before he can be discharged, so we will do that over the weekend and into next week. They recommend doing it separately so we each feel comfortable with his care. I'm starting to feel tired, just tired - ready for the crazy schedule to be over. My brain hurts when I try to figure out how we're going to coordinate next week. God continues to tell me to trust, and let Him be in control!

Our friends Erika & Carl (who have helped us so much by scheduling our help with Toby at the hospital and updated the website :) have strep throat, so they are under the weather. Pray they heal quickly, and that their children will not get it.

Moving in the Right Direction

Things are starting to roll along in the right direction to bring Toby home. We will have our training this week on the ventilator, and had our home inspected to make sure the wiring can sustain all of the equipment. The nurses are the biggest decision at this point. I think we're going to be able to share Erika & Carl's nurse for Evan. She will be able to come to our house on Tuesdays, so now we need a day nurse for the other week days as well as a night nurse. Toby is doing great also. :) He's such a popular kid - all the nurses want to have him at the hospital; I just wish we could take some of those nurses home with us! They're wonderful.

Nurse Interviews - Never Ending

The interview with the daytime nurse also went well. We're not sure if she's the one for us, though, so we are going to ask for someone else - just to have a comparison. It's hard choosing someone that will be in our house 40 hours a week, but we know it will work out soon. We're hoping to get things rolling this week with the medical equipment company coming out to check our electrical and make sure that things can support a ventilator, etc. We are ready for him to come home soon.

Waiting on Equipment

The interview with the night nurse went pretty well. She seemed competent and friendly. We are praying about if we should ask her to come or not. Today is our other interview for the day nurse. Toby is doing well - again we're just waiting on equipment and vent. training. Bruce's niece, nephew-in-law and great niece are with us this weekend, helping us with the boys and Toby. It's such a blessing to have so much help!

Nurse Interviews

This is Erika updating!

Carrie asked me to write a quick note on here to pray for them as they interview their nurses. The first interview is tonight (Friday) at 8pm and the other one is 1pm tomorrow (Saturday). From experience, this is a hard process. Carrie and Bruce know they need nursing care to help care for Toby, but it is very difficult to have somebody you don't know well in your house for 16 hours every day. These nurses will have an influence, not only on Toby, but also on Conor and Garrett. What a blessing if these nurses believed the same way the Holts do! Pray that Carrie and Bruce will know one way or the other whether these women they are interviewing are right for their family. Once they do find nurses, pray that it is a good fit! They will definitely need continued prayer in this area, not only this weekend, but also in the months to come!

Bow the Knee

Toby continues to have good days and nights. Bruce changed his trach today with the help of the nurse practitioner and myself. It wasn't as intimidating as we thought. He cntinues to steal the hearts of the nurses, doctors, and therapists. (Toby, not Bruce! :) :)!!! ) Conor also continues to do well after his surgery, and his eyes seem to be straight. He even went to school today.

On Sunday, Bruce and I were able to attend church with our family, and this song that our choir sang really touched our hearts, and I wanted to share the words with you.

Bow The Knee

There are moments on our journey following the Lord 
where God illumines every step we take 
There are times when circumstances make perfect sense to us as we try to understand each move He makes 
When the path grows dim 
and our questions have no answers turn to him

Chorus 
Bow the Knee 
Trust the heart of your father 
When the answer goes beyond what you can see 
Bow the Knee 
lift your eyes towards Heaven 
and believe the One who holds eternity 
and when you don't understand, the purpose of his plan 
in the presence of the king Bow the Knee

Verse 2 
There are days when clouds surround us and the rain begins to fall 
the cold and lonely winds wont cease to blow 
And there seems to be no reason for the suffering we feel 
We are tempted to believe God does not know 
when the storms arise, don't forget we live by faith and not by sight

May the journey we have taken encourage you to draw closer to God as He is all we need, and He is the only one worthy of bowing our knees to. Thank you, God for guiding us every step of the way.