Feed Changes

Toby's belly is still filling up with air. At different points of the day it's bigger than others. The nutritionist called today and they are increasing the amount of food and calories he is getting. Now he will be on 38ml per hour over 20 hours instead of 36 ml per hour over 16 hours. She also seemed surprised that they were fortifying the breastmilk with similac..seems that when you feed a baby into his jajunum (small intestine), they need to have a type of formula where the proteins are already partially broken down. That news was a little bit frustrating. Oh well, we had taken him off of the similac on Monday anyway to see if it would help. It's made a small difference. Please continue to pray that this will get under control as it is affecting his breathing. His g-tube is also still building up granulation tissue around it. I'm praying that it will heal soon. A praise and huge answer to prayer!! We were approved for the Ohio Medicaid Home Care Waiver. A case manager is coming out next Tuesday to do a care plan. We're so thankful for this! I was also able to get out today and visit/serve lunch from our church to the school where I used to teach. It was wonderful to be able to see everyone. They have been so encouraging to us through all of this - sending cards, praying, etc. It was nice to be able to give something back for a change. Oh yes, and we have a night nurse on Sunday nights now too - she's the same nurse that does our Tuesday and Thursday nights, so now we have 5 nights covered, which is all we want for right now. Hopefully we will get more sleep now!! Good night!

Belly Distension

Toby's belly is still a little bit distended; the medicine he's on is helping. We are also going to try to change his food a little bit to see if that helps. Please pray that it will help resolve the issue, so his lung volumes will be better. Another request is for the skin around his g-tube site to heal. Every few days it gets a build up of scar tissue and then we have to re-treat it, etc. We really need it to heal up. Toby saw the pediatrician today for some vaccinations; and he did well. He seems to be making some progress grasping both of his hands together and focusing on us. Developmentally he's behind; still can't hold his head up for an extended period of time, doesn't focus on an object, etc. We're definitely working with him on these things, so it's nice when you see small improvements! :)

Surgery and Myelomeningocele Clinic Appointment (Toby's First)

Toby't appointment went well today. He weighs 11 lbs. 7 oz. and he's 22 1/2 inches long, so he's growing as he should along the correct growth curve. His g-tube site is looking really good, but the stoma (or the hole - where the tube goes in) is getting larger and larger, so we're going to try a few more things to keep it in place so it won't enlarge anymore. We will see the surgeon again in a month. Friday is the big appointment = it's going to be a long day, but I'm looking forward to seeing the myelo doctors. (April 24, 2007)

Well, Toby had his first myelo clinic appointment today. We saw a physical medicine doctor, occupational therapist, physical therapist, urology nurse, pulmonary doctor, and developmental pediatrician. The visit today took 6 hours, and yes Toby, the nurse, and I are exhausted! Most of the doctors just completed initial assessments on him. The OT and PT gave us ideas for helping his development - helping him move his legs more, develop better head and trunk control, and focus more with his eyes. One thing he doesn't do is keep your gaze for an extended period of time; his eyes have a tendency to jump around quite a bit. I was also concerned that he had club feet, and he doesn't !! Yeah!! The pulmonary doctor was kind to come and visit us so we didn't have to set up a separate appointment. They did a chest x-ray and a blood gas. His blood gas came back great, which means the ventilator is doing what it should. The chest x-ray did show his lungs aren't expanding to their full volumes. The major reason for this is he tends to have so much air in his bowels/belly that it pushes up on his diaphragm, which pushes up on his lungs. Not good, so we're trying some new techniques this weekend to help keep his belly soft. His tummy was very large and hard today, and as he was breathing he was really retracting in, so that isn't a good sign. Please pray that the air in his tummy will resolve. (One cause might be because he receives his food in his small intestine, but I'm not sure what they can do about this). We will see. We will call the doctor on Monday to let him know how he did this weekend with some of the things we are trying. Thank you for praying. It's been a long day! (April 27, 2007)

Coming Up

Toby seems to be getting over his cold, his nose has dried up and his secretions are less!! But, then, he had a fever this morning (and Garrett does too!). We wanted to go together to church this morning - all of us, but it didn't happen. Oh well, maybe next Sunday. The weather has been beautiful, so hopefully we can get him out for a walk this week. We have 2 doctor's appointments this week. One on Tuesday with the surgeon to check his g-tube site, and then the big one on Friday. Friday is his myelomeningocele clinic appointment (or spina bifida) with all of the specialists (4 total - urologist, physiatrist, orthopedic surgeon, and developmental pediatrician) and then the pulmonary doctor will come and see us also. We're having some major issues with applying for the Medicaid HomeCare waiver. Pray that we will be approved, so we don't have to go through the process of an appeal at a state hearing. This would help us cover medical expenses when insurance doesn't cover. It's been a huge headache this week, trying to get answers, so this is a huge request. Have a great Sunday - it's beautiful outside!! :)

Growth and adjustments

We continue to do fairly well at home. Toby still has a lingering cold. His g-tube site is looking much better. The boys seem to be adjusting to Toby being home. Garrett isn't as jealous and tries to put his pacifier back in Toby's mouth, etc. and be a helper! He loves to help move the ventilator (on the stand that rolls) from the bedroom to the living room. I taught Conor how to read the numbers on the pulsoximeter, so he knows how to tell me what the oxygen level or the heart rate is. It's amazing to hear Conor walk around the house and say the words like suction and pulsox! Some days are good, some days are hard. The grind of every day life and having a child with special needs - such as knowing that there will always be health issues to deal with can really get me down at times. I'm learning to be content; in some ways this time at home has been more trying than when he was in the hospital. It's difficult because in some ways you are continually going through a grieving process for what Toby should be doing at this age, or the things that he never be able to do. We're also used to being able to go and do things with the other 2 boys. After the nurse leaves, I can't just take the boys outside to play - this has been very hard for me. I have realized that we can't just pick up and go camping or to the beach like we have loved to do in the past. Through all of this, is a level of grief and then acceptance. God continues to teach us to lean on Him for every need, and to be content in whatever place He has us. He is still good, and we are thankful - thankful because now our dear little friend Evan, isn't alone anymore. He has a friend also on a ventilator. Evan told Erika, "Toby has a trach just like me, and Toby gets suctioned just like me!" I'm glad that Evan has someone to relate to - just like him. God has blessed us in so many ways - and we will continue to give Him the glory, even in the valleys.

Struggling with Viral Infections

We have another night nurse! Now we have one for Mon/Wed and one for Tues/Thursdays. Hopefully we can also have one for Sunday nights and we will be covered for all that we want/need right now. Toby is still struggling with a major cold - this weather isn't helping at all. He seems in good spirits, though, and is loving watching his brothers. He's definitely looking bigger and chubbier - haven't weighed him this week, but will soon. His g-tube site is healing also; so we continue to treat that. We're having a good week! Have a wonderful weekend.

More Updates and Toby's First Easter!

Not much to report. Toby has been having good nights and days. It is amazing to me how the weather affects how thick his secretions are, and how often we have to suction out his trach. This cold weather and snow can go away very soon! :)

Happy Belated Easter. We had a wonderuful weekend with our family, but it was very cold - snow on Easter Sunday! Crazy! We actually took him to church on Sunday, and it wasn't too bad with all of his equipment; we made it on time too! :) He still is struggling with a cold, a lot of secretions, so please pray that he will get over this soon. I know some of it has to be due to the weather. I will try to post photos of Toby in his Easter outfit soon.

April 10th:
We ended up making a quick trip to see the surgeon again today about Toby's g-tube site. It's still looking red, inflammed, and has scar tissue building up around it. The nurse burned some of the excess skin with silver nitrate, and gave us a prescription for the same to help this problem. The doctor was pleased, though, saying it looked better than a week ago, so I was happy about that. He seems to be doing great. We interviewed another night nurse tonight for at least one night if not 2 nights, and we really liked her. Toby started sucking on his fists today! :) It was very cute; try to catch it on camera soon.