Infection Questions

We went to see the surgeon this morning that placed Toby's g-tube. The site has been red and it a little bit infected, so they put him on an antibiotic. He seems wiped out today and is running a fever. I am not sure, but it doesn't seem to be a trach infection - just something viral, or could it be an ear infection? It's so hard to tell when they're this little. Thankfully the antibiotic will help with anything else that could be bothering him. I'm sure he's tired out from traveling 2 days in a row. My parents, and siblings are coming for Easter...as well as Bruce's parents on Sunday. We're looking forward to celebrating the resurrection of Jesus! The other day Conor wanted to go up to heaven to tell God that He needs to put pink in the rainbow. He said that if he told God he was sorry for his sins and asked him to, he could go to heaven. I told him most definitely that this was correct! Day by day, I know that the things we're teaching him, and the things he's hearing at church are beginning to sink in. 

Toby always officially weights 9lbs. 14 oz. and he's 21 1/2 inches long!

First Outing - A Trip to the Doctor

Toby had a great outing today today. He had a CT scan first, and then we saw the neurosurgeon (these appointments are at the hospital). His CT scan showed that he had no fluid in his head, his brain is filling his skull and not fluid, so that is great news. We go back in 3 months to see the neurosurgeon and in 6 months for another head CT. It was nice to get out on such a gorgeous day (It was over 70 degrees here). The nurse went with me, and everything went smoothly. Tomorrow we go back for another doctor's appointment to see the surgeon about his g-tube - just a check-up. It has been a little bit irritated lately, and bleeding, and it has some scar tissue building up around it, so we will see what the surgeon says about that.

First Smiles!

Toby is beginning to smile! :) As soon as I can snap a photo of it, I will post it on the web-site. He seems to be doing well, still a bit of a cold, though - runny nose. This weekend was a blessing - good for Bruce and I to have a little time together. The boys had a lot of fun with Aunt Lynsey!!! Tomorrow is our first doctor's appointment at Children's Hospital. Friday, our nurse and I did a "dry run" to see how long it would take to get him out of the house. It wasn't too bad; I think we will be able to manage. Looking forward to getting him out even if it's just to see the neurosurgeon, and have a CT scan to make sure his shunt is working properly. We're enjoying the beautiful weather. Hope you are too.

 
• Share this on Twitter
 
• Share this on Google Plus

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.