Friday, May 29, 2009

Sick Babies!

Elliot and Noah are STILL battling this respiratory virus going on 17 days now! It began with a very simple runny nose, which then led to a cough. Noah would struggle with the cough alot at night, in the morning and after naps. I made several calls to the pediatrician explaining that I thought they should be getting better and describing their symptoms. I kept getting the same thing, "it's just a virus", "it will run its course", "most viruses last up to two weeks", "no fever means no infection", "try a nasal mist" etc, etc. I was doubling up on Noah's breathing tx and that was about all I could do. It really isn't keeping Noah down at all, he is still running around, getting into everything, despite the cough and congestion. Finally on Tuesday I called the Pedi again letting her know they STILL aren't improving and need to be seen. The best they could do was give me an appt for Wed afternoon. During this time I even tried calling another pediatrician to switch practices and was told I would need to submit a letter for review of why I wanted my children to be seen there. Good grief! I just wanted someone to look at them! By the time we got to the pedi on Wed Noah was wheezing so badly that she said she hardly heard any air moving through. She still didn't suspect infection but started him on oral steroids immediately and increased his dosage of Xopenex and told me to give him tx every 4 hours. Elliot was in far better shape, but he too was wheezing. No steroids for him, but he is sharing Noah's breathing tx's. We took Noah in for a chest x-ray that came back negative for pneumonia.
I don't think I can stress enough the value of a good pediatrician, of which I have learned a great deal about it the past two years. Especially with a kid that has chronic lung problems, but in general, just one that will truly listen to your concerns. So, here I have been second guessing myself each time I get off the phone with her, and finally when she does see them, I feel terrible for not pressing the issue much harder in the first place. This is not the first time this has happened, so once again, I think we are making the switch to a different doctor. I feel that we are going a thousand different directions trying to manage his care and we really need someone to be following all of it! Someone committed to following him regularly and not just when he is sick. We have explained this to both of the pedi's was have had, and even have a great letter from the U of M outlining what they need to be followed for in the years to come. The biggest thing is that they need to be proactive, not reactive!
Anyway, this was not intended to be a vent session for me! I have a million pictures of the kids from the last month that I promise to put together and post, soon. Can you believe that our Noah is about to celebrate his 2nd birthday? That's right! 2 years old! I get a lump in my throat just thinking about it! The Happy Birthday song has a whole new meaning for me now! Brian and I were just saying last night how two years ago at this time we were sitting at the RMD house waiting for the big day, meeting our dear CDH friends for the first time, and being terrified of what was coming. What an amazing support system we had, and still have today.
I promise to put up pictures soon!

Sunday, May 17, 2009

Zane the Athlete and some changes for Noah

Zane competed in a Triathlon for NWAS this Saturday. Despite the weather, he finished each event, which included a 1/4 mile swim, 2 mile bike ride, and 1/2 mile run. He is so proud of himself as were all of us! We assembled the "Zane fan club" to cheer him on in the pouring rain! I think he really enjoyed himself and is already looking forward to next year! He is on the countdown to summer, only 11 days left to go! The fact that he will be a 4th grader is still sinking in with me. It really does go by too fast...
Noah had a pretty big week. We finally talked the pediatrician into running lab work and thankfully it all came back okay. We have been working very closely with Jeannie and Emily, the dietitian from U of M to get some of these issues figured out. We are so thankful to have them to work with. Some of the main concerns right now are:
*He is still not eating or drinking...anything
*He is still having occasional swelling of the hands, feet and face
*Digestive issues
*Sunken eyes and poor coloring
*No weight gain despite the calories we are giving him and no room to add volume.
After the results of the labs and conversations with the dietitian we have made some changes:
*We have increased his water bolus to 75ml 4x daily along with the 2 formula boluses and continue with the 12 hours of continuous J feeds at night until his weight improves.
*Added a daily pro biotic
*Added a daily vitamin
*We will start giving him Duocal 4x daily. This is a powder supplement that dissolves in water that will add calories without volume to help with weight gain
*He will be starting an aggressive outpatient feeding therapy twice a week with both an OT and speech therapist. Obviously we are giving him everything he needs by tube right now until we get him up in weight. I imagine it will be awhile before we can cut back on volume in an effort to stimulate appetite again. We need to build a buffer so he has some room to lose a little.
Right now both he and Elliot have pretty nasty colds and coughs. It's not been to fun for either of them but they seem to be improving. Noah is up alot through the night coughing but it hasn't slowed him down during the day. He loves playing outside with Zane and the two of them would stay out all night if I would let them. He is getting more and more comfortable with people, it is such a welcome change to see him interacting and playing when people are over or we are out.
In just a few weeks we will be celebrating his 2nd birthday...what a blessing!

Sunday, May 10, 2009

Mother's Day

I have learned so much from not only my own mother, but all the mothers I have met these past few years. One thing I have learned is that being a mom is not defined by how many diapers we change,(there are moms who haven't changed any), it is not defined by how easy or difficult our labor was,(there are moms that have never been pregnant), it is not defined by the number of hours we have spent with our children, or by the daily runnings, shoe tying, nose wiping, ect, ect, ect....To me, being a mom is simply defined by the love we have for our children. It is that love that moves us to do anything and everything we can for them. From the mom that puts thousands of miles on her car running kids to this or that, to the mom who sits by her child's bedside in the hospital, from the mom who devotes her life to raising awareness in memory of a child lost, to the mom that runs the PTA. The love for a child is the most amazing, beautiful, unmeasurable love there is. Loving our kids is a full time job, 24/7, no matter where they are, what they are doing, or how old they are.
I am so blessed to have been given three beautiful boys to love, each one of them so different, but loved just the same....
I hope you are all having a Happy Mother's Day!

Monday, May 4, 2009

Update # 2

Now for Mr Noah! He went to the pediatrician last week as well for a check up and shots. I tried to express to the Dr a few concerns and ended up leaving frustrated and second guessing myself. We know that Noah hit some sort of wall about 6-7 weeks ago with eating. He was doing so well and out of nowhere, stopped eating and drinking. In the last week he has picked up a little, but nothing like he was. We are now back to feeding him through the J all night and giving 2 boluses of formula and 5 boluses of water during the day through the G-tube. I have noticed that as the day wears on, his eyes appear sunken in and dark underneath and his color is sort of pale and grey. The past few days I have noticed slight swelling in his hands and feet. He has always had a few "potty" issues, but I have noticed these now more than ever as well. I voiced all this to his Dr and inquired about anemia or vitamin definciancies and she said that he should be getting all the vitamins he needs as well as iron through his formula. She suggested that his coloring and sunken eyes could just be that he is tired. Of course I don't want to put Noah through anymore than he has been through, but I really think he needs some labs drawn and a deeper look into what may be going on with him. The pedi wrote a script for outpatient OT with a feeding specialist and speech therapy as well. I spoke with Jeannie at U of M and she suggested that they draw a CBC and check vitamin D. The pedi said it was unnecessary and to just wait it out. I know in my gut that something is going on, I just don't know what, but I will bet it's not just that he is tired... We are going to try adding in an extra vitamin, daily probiotics and good old fashion Mylicon drops for gas.
We had our first evaluation with the OT feeding specialist today and it could not have gone better! I was terrified that Noah would not tolerate it and his anxiety would be at its prime, but he warmed right up to her and played with toys. By the end of the evaluation he was walking the halls as if he owned the place, waving, blowing kisses and yelling, "luh loo, luh loo!!" (love you) The OT was FABULOUS and I instantly felt that she totally understood. She agreed that it sounded as if something else was going on and lab work would be very helpful. Feeding issues are so frustrating and there are so many opinions and schools of thought when it comes to tube fed kids and oral aversions. It was so nice to have someone that looks at the whole picture and has so much experience with these issues. He will have his speech eval next week and the two therapists will get together and come up with a plan. I am really looking forward to making some headway!
So, I am going to call the pediatrician back this week and make another request for some lab work. I know there are some nurses out there in blog world, I would love to hear any suggestions!