Wednesday, January 31, 2007
Life is never dull around here! Noah just spent the last four days in hospital AGAIN!! During the night on Saturday, Noah's GJ tube came out. He has gotten very good at pulling at his dressings! When his stoma is leaking so much and all the dressings are wet, it doesn't take much for that tube to come out. Since the radiologist has to put it in and we had no way of feeding Noah, it was off to the ER on Sunday morning. He was admitted right away and an IV started, since he was already starting to get dehydrated. His stoma was also infected and he was spiking fevers, so he was started on IV antibiotics. It took until Tuesday to finally get his GJ tube back in place. He tolerated his feeds overnight, so we were able to switch to oral antibiotics and come home today. Hopefully this tube will last us a bit longer!! I was just so thankful that this didn't happen when we were in Florida that I didn't even mind that much being back in hospital! God was certainly protecting us out there! We are certainly happy to be home today though. I start work tomorrow, so hopefully my first day goes smoothly, as well as Brad's day here at home.
Wednesday, January 24, 2007
Sunday marked Noah's 16th month. Once again time seems to be getting away on me. He weighed in this morning at exactly 10lbs! We are already back into the swing of things here with therapies, doctor appointments. and... oh yeah, did I mention illnesses?? Noah has already caught a cold since we got back, so hopefully it doesn't turn into anything more. He has a sleep study scheduled for February 7th if he is healthy, so we will be back in hospital overnight. Hopefully this will give us some better information about his sleep apnea and oxygen requirements.
We also met with Noah's plastic surgeon today. The plan for now is to schedule surgery for sometime in May, when Noah is about 20 months. If his sleep apnea has worsened by then, we will probably go ahead with the lower jaw surgery at that time and not do the palate surgery until a later date. But if things stay the same or improve, then we will likely not do jaw surgery. Our surgeon would repair the palate at that time instead and basically see what happens as far as his breathing issues go. He will likely spend a few days on the ventilator in PICU to let all the swelling in his airway go down. If he doesn't do well off the ventilator after a few days, then the palate would have to be opened up again to allow him to breathe. Unfortunately we won't know how things will go until then. We will meet with the surgeon again in April to decide exactly what he will be doing.
I'm also finally taking the plunge and going back to work at Women's Hospital. I'm both very nervous and also excited about it. A part of me wants to give up my nursing career and devote all my time to the kids. But another part of me wants just a small piece of my "before Noah" life back for my own sanity. So on February 1st I will go for a 12 hour orientation day (since it's been a year and a half since I've worked!!). It will be the longest I've ever been apart from Noah, but he will be with my hubby, so I'm sure they can survive a day without me. Not sure if I can handle being away for so long, but if I don't go back now, I may never do it! I am hoping to be able to pick up one shift a week, when Brad is not working. So we'll see how it all goes!!
To end on a very positive note...Noah is learning how to blow kisses!! It is the cutest thing ever!! If we blow kisses to him, he will put his hand up to his mouth in his own attempt to imitate us! It's exciting to see his mind working and progressing. Our next project will be to teach him how to wave bye-bye. We are so blessed to have this child in our lives and each day with him brings so much joy. Life is never boring around here and we wouldn't have it any other way!
Sunday, January 21, 2007
We arrived home from our Florida trip yesterday evening. Our 2 weeks there were a wonderful much needed break for everyone. Everything went so smoothly and Noah did great! He loved the travelling and all the sights and sounds of Disneyworld. We spent the first week in Orlando (most of our days at Disneyworld and 1 day at Seaworld) which was very busy, but lots of fun with the kids. We were able to get a Guest Assistance Pass for Disney which allowed us to use Noah's stroller as a wheelchair. This gave us special seating at the shows and we were able to skip alot of the lines for the rides, which was a huge help!! The sun and warm humid air was great for Noah's health, probably the best thing we could have done for him. His RSV cleared up completely and his breathing was so good. I think we'll have to make this an annual tradition (for medicinal purposes of course!). We are still having issues with his tube sight, but that seems to always be an ongoing battle.
We spent the second week at Daytona Beach which was much more relaxing. We had some great beaching weather and Noah even got a bit of a tan on his face.He is slowly gaining weight again and is just shy of 10lbs now (9lbs 14oz). Although the time went by far too quickly, it is good to be home again. We are so thankful that we were able to take this trip together and we thank everyone for their many prayers. For it is truly a miracle that we were able to go.
Sunday, January 07, 2007
We are in Florida and all is going well. Noah is feeling much better and his cough is completely gone! Must be the great humid weather we are having (27C today). We spent the day at Disney's Animal Kingdom. The kids all had a great time! Thank you for all your prayers. The flights went so smoothly and Noah slept through all 3 of them. We are looking forward to another full day tomorrow.
Friday, January 05, 2007
Here we go! We are off to Florida in the morning and will be gone for 2 weeks. Noah is still recovering from RSV and has a nasty cough, but his lungs are improved and our doctor has given us the ok to go. Hopefully the sunshine and warm humid air will help his lungs recover. I am nervous about going, but much prayer has gone into this trip and we are trusting in God's guidance. Granny & Grandpa Harder are coming too, so we will have lots of extra hands. Kailyn & Joshua are bouncing off the walls with excitement!! We ask for your prayers for health and safety as we travel.
Tuesday, January 02, 2007
We are back home again!! Noah is still recovering from RSV (bronchiolitis) as well as cellulitis around his g-tube site. He still has a nasty cough and is requiring oxygen 24 hrs a day right now. He was getting vapo masks every few hours in hospital, but the wheezy breathing has improved. Since RSV is a virus and antibiotics aren't effective against it, we just have to wait it out and pray for a quick recovery. Hopefully he will be off the extra oxygen after a couple more days. Although this 5 day stay was much shorter than our previous ones, it has been some of the most lonely and discouraging days we have had. We thank you all so much for your continued prayers and we continue to trust in God's faithfulness.