Tuesday, October 30, 2007

October 30, 2007

I'm so thankful to be home, but the truth is I felt safe int he NICU. Everything is about medicine there. Now that I'm home the reality of how abnormal things are drowns me. I should be showing Alex off, but I feel like hiding away. I have never felt more alone. No one knows about RTS. I'm not sure why I don't want to tell anyone, I guess denial that it is real. He seems so perfect to me.
Everyone is living their normal lives around me, the world just keeps on spinning. My life has stopped, I am stuck, scared, and no one knows it.
This is bigger than I thought.

Sunday, October 21, 2007

October 21, 2007

We are home!!!!! We arrived with our bundle of joy 6 weeks, and one day later than planned, but we are home. We give God the glory for bringing us this far, and know He will continue to get us through the next steps ahead. Alex has about 7 follow up appointments from now until January, so we will be vistiting our first home at Cardinal Glennon alot in the next few weeks. We are so thankful to be home, Alex has been sleeping much deeper than he ever has, and continues to eat better and better, we know that soon we can throw the feeding tube away, keep praying for us.

Saturday, October 20, 2007

Top 10 medical issues with RTS

At the 1998 conference, recommendations were made of what medical examinations needed to be done after a diagnosis of RTS is given. The following areas were covered: (Remember not every child will have every issue, these are just issues to be aware of, and I repeat your child will NOT have all of these issues.)1. Undescended testicles in the males - orchipexy should be done as soon as possible.


2. Kidney & bladder tests should be done to check for reflux or any defects.
3. An MRI for Tethered Spinal Cord is now recommended. An Ultrasound may be done before one year of age. New advances with the MRI allow them to see the spinal cord move during the MRI, creating a better picture. If any parent should notice complaints from their older child on leg aches, regression in bowel/bladder control, more walking difficulties, they should consult with pediatric orthopedics to have an MRI if one has not been done in the past to check for the Tethered Spinal Cord.
4. Onset of puberty and growth also can make the orthopedic problems of walking, scoliosis, knee problems, and hip problems worse.
5. A complete cardiac exam needs to be done as well as pulmonary tests.

6. Anytime surgery or anesthetics will need to be used, an Anesthesia Consult is recommended because of possible tracheal collapse, cardiac arrhythmias, or refluxing.
7. An eye exam is recommended at birth and regularly from there on by a pediatric ophthalmologist because of the high frequency of eye problems in RTS.
8. Pediatric Dental visits need to be started as early as possible.
9. If GE reflux is present or suspected, tests should be done to determine the extent of problem. It is recommended to have a PH test done, an endoscopy, & testing for the reflux and associated esophagitis.
10. Corrections should be done to alleviate the problems with the thumbs and toes, depending on the extent of the defect and how the child can use them without surgery.

Copyright © 2006 Special Friends Foundation -- All Rights Reserved

Thursday, October 18, 2007

October 18, 2007

Things have been going well over the past couple of days. In the last day Alex has started to more consistently eat more on his own. If this trend continues then it is very likely that Alex will be coming home soon. Jessica and I will have to learn how to put his feeding tube in and learn how to run the machine that delivers the food via that tube. We got strict orders to get flu shots, which Jessica and I have received already and Noah and Joel will have done in the next week. We've already been through this once but we have to get the house cleaned and ready to bring Alex home. I'll let everyone know once he is home! Hopefully that will be one of the next couple of updates I do.

Monday, October 15, 2007

October 15, 2007

Alex has a UTI. :-( They started treatment for it yesterday. He has to get 1 shot a day for 5 days.
At 1st they thought they would have to put a direct line back into his neck in order to administer the medication. Jessica was very upset yesterday when they thought they would need to put the picc line back in. She sat and watched the last time they had to put one in and it took three hours and three different nurse practitioners to get it in. Alex's nurse called me yesterday and said I better drive down and sit with Jessica, she was falling apart, but is doing better now.They also thought that they would need to do it for 10 days. You can imagine how relieved we were to know that they would not have to put the direct line back in and that it would only be 5 days. He has been doing ok with his eating but not quite as well as Jess and I would like to see him do. He'll get there though. Seems the longer this goes the more mentally draining it is. We are holding in there and we know that it won't be much longer.

Friday, October 12, 2007

October 12, 2007

Just got back home from visiting Alex tonight with Noah and Joel. It was the 1st time that they have ever really seen their brother without all the tubes and machines. Sorry I have not updated in a few days but I have added a few new pictures. Everything is going well. Alex has remained off of the breathing machines and his breathing is doing great without them. He had a fever this morning and it was believed to be caused by a Urinary Tract Infection. They did do a spinal tap just to be sure it was not caused by something more serious. Common operating procedure for babies under 6 weeks old with a high fever I guess.
He had no fever tonight and seemed to be doing well. When we got there it was feeding time so Jessica gave him a bottle. He ate pretty good while we were there but then they finished off the bottle by giving it to him through his feeding tube. They want him to eat approximately 75 ml of milk on his own through a bottle. He has normally been taking around 10 ml from the bottle. But after the boys and I left tonight Jessica called and told me that he ate 25 ml from the bottle around 9 pm. We're thinking that he finally decided to give this eating thing a good shot. Once he is taking in the right amount of milk he should be able to come home. If his overnight and morning feedings continue to improve I will definitely let everyone know tomorrow.

Tuesday, October 9, 2007

October 9, 2007

AWESOME NEWS EVERYONE!!!! Alex is no longer using the nasal cannula. He does not require any more breathing assistance. This is a huge victory! I cant believe how far he has come.
Our last obstacle is eating.
He is being given Pepcid for the acid reflux but it will take a couple of days still to see the full effect of this medicine. They have also been thickening the milk which has helped a little. His sucking reflex is getting stronger too so it is all just a matter of time before he masters eating as well. And before I know it I will have 3 teenage boys in my house eating me out of house and home. I'll keep you all updated on how the eating goes.

Monday, October 8, 2007

October 8, 2007

The latest update is that Alex is still on the nasal cannual. However, he is breathing the same amount of oxygen as you and I are. The amount of flow through the nasal cannula is 1 liter. I don't really know what 1 liter means but I do the next step down is 1/2 a liter and then a 1/4 of a liter. So he is very close to being off of the breathing equipment. He has ran into a little trouble with the eating. Seems he has acid reflux and it is making things a bit difficult. Today the doctors will decide if Alex should be given Pepcid or some other drug to treat the acid reflux to make it easier to eat.

Thursday, October 4, 2007

October 4, 2007

Alex has been eating milk! A little at a time, like 5cc's but Jessica tells me that he is doing well. This is excellent news but it makes it even harder for Jessica to leave him in St. Louis to come home and be with Noah and Joel and get some rest. She is on her way home tonight and will get to spend the day with both boys tomorrow since they have the day off from school. Alex is still on the nasal cannula but they keep slowly turning down the amount of gases they are giving to him. He keeps maintaining the same stats when they turn them down. Slowly but surely he is working his way towards coming home. Jessica and I are both so proud of him and the great progress he has made.

Wednesday, October 3, 2007

October 3, 2007

Alex has been moved into a crib instead of a special monitoring bed. He is still on the nasal cannula but they have been reducing the levels of oxygen they have been giving him and he has been holding steady. Jessica was able to get him to suck on her finger for about 30 minutes yesterday and then he would suck on a pacifier. Today they are going to try feeding him milk! Remember that in his 3 weeks he has not had milk, only TPN. Jessica has also been able to hold him a few times since the surgery. Things are going great. Jessica and I are really thinking that he will be able to come home soon. Only steps we have are getting him to breathe on his own without the nasal cannula and eat on his own.