Our Loves

Thursday, March 31, 2011

Preston update

I wanted to write a quick update to get everyone up to speed with the upcoming things Preston has going on and to ask for your prayers for him. The big thing is that Preston is going to be having surgery on Wednesday of next week to remove his tonsils, adenoids, put in tubes in his ears and to scope his larynx and airway again to see what's going on.

Preston had another stridor/laryngotracheomalacia (floppy/collapsing airway) episode one night in February that we had to make an ER visit for. The steroids and bronchodilators worked quickly again so we were very thankful! He has been having increasing issues with snoring, extremely restless sleeping and waking in the night on and off since then. We saw Preston's pulmonary and ENT doctors last week and they felt like he is having sleep apnea and said that his tonsils are quite enlarged and that may be contributing to his stridor/airway collapsing issues. We originally had scheduled this for the end of April, but he has been sleeping so terribly the last few days that I called them on Tuesday and they felt it would be best to move it up to next week. Preston's surgery will be at Medical City Children's and with tonsils it requires a minimum 1 night hospital stay to observe. Going home depends on how quickly Preston will drink enough liquids to stay hydrated. Since Preston has experienced some variation or another of respiratory distress after each time he has been intubated they have ordered a PICU room for him to go directly to after surgery. We will definitely be having a 24 hours stay in the ICU. I actually feel a little better about that this time because the 2 instances we have been alone with him recently when he started having these stridor issues out of the blue were a little scary and I know the PICU nurses are much more equipped to handle emergency situations. That's the scoop on that.

Of course everyone has concerns with his oral aversion issues and how he will respond to drinking and eating while having some pain in his throat. I am maybe being too optimistic, but I really feel like he will want to drink when he is able to. We will see though I guess. Eating, well that's a whole different story, but frankly he has really been fighting us a lot this past month with eating anyways. I think he has been tired, congested and really anything that throws him off of normal makes eating quite a challenge. We will just take his eating one step at a time after his surgery.

Luke had tubes put in yesterday morning and by the afternoon he was 100% back to his feisty self. He is the one who has always had the ear infection issues and I dropped the ball last spring and should have taken him to the ENT then, but it was during Preston's inpatient feeding stuff and it sorta of got put on the back burner. Luke was quite funny when he got his goofy juice yesterday morning before they took him back. He was talking and laughing some and playing with a little stuffed animal they give him. He had a little trouble with vomiting (no shocker) when he woke up so our stay after was longer than the pre-op and his surgery put together, but once he got some zofran he was good to go. Poor kid has a sensitive tummy like me! He really was a champ though and after we finally were able to get his stomach settled to leave he even felt like eating a little breakfast out. So we made a trip to Breadwinners after leaving the hospital ;-)

Preston has his semi-annual developmental pedi appointment this Friday. This is always a tough one that you kind of have to just let it all roll off you once you walk out of there. We do like Preston's Developmental Pediatrician - she is a nice, caring person, but it is not an easy thing to see on paper, there in black and white, Preston's delays and low scores. It is also always a tough decision as to whether or not we want to go there with the question of what does this say about Preston's future. We now know this is just her educated guess based on her experiences, and if you asked all Preston's doctors they will definitely all give you a different answer. So that's usually mine and Randy's big debate before we go into this appointment.

Randy and I were talking earlier this week and we both said it's not like we wake up every morning feeling like we have a "different" kind of family or that Preston is really that different from any other child. This is our normal and it's really all we know. These type of appointments are hard because it really is all focused on how things are different with Preston and again what that may mean down the road. It's definitely difficult to not to let these things weigh on you and bring you down. I am looking forward to getting Friday's appointment over with and filing away the papers and getting on to our weekend. :-)

Thank you all again for keeping Preston in your prayers! Preston and Luke are both such sweet boys! It has been so fun since the weather has been nice to get out with the boys and do some fun things. We went to the zoo over spring break and they boys had so much fun watching the otters play and swim - actually we all did. Aunt Ashey wants an otter aquarium in her house when she grows up! ;-) Randy has taken the boys on some great adventures exploring the parks and trails around Southlake and Grapevine. He is wanting to take the boys to Tyler this Saturday if the weather cooperates to do some more exploring around there.

I will keep you all posted the best I can. I know some of ya'll are anti-facebookers, but it really is the easiest way to stay connected to family and friends so think again about it. I have had countless great things happen through FB and I totally believe the good it brings out weighs any of the negatives. I am going to leave you with a few pictures I have been meaning to put up since the boy's Birthday Day and Birthday Party! Have a great weekend and get out there and enjoy the sunshine!



This picture is from the boys Birthday Party! It was at a play place that had a bouncy house, a climbing play tower with a slide and other toys and play things. The boys had a lot of fun!!

We went to Jump for Fun on the morning of the boys' actually birthday, New Years Eve. It was pretty slow there that day so we practically had the place to ourselves. We broke a few rules and did some group sliding. ;-) We all had fun going to the slides and jumping in the bounce houses and racing through the obstical course. I beat Ashley, but I am pretty sure Josh beat Randy. This was our cute group picture!!
I thought this picture was pretty cute! Grandpa and Luke walking to Caleb's Birthday Party. It was at Dinosaur Valley Park and we had so much fun!!




Luke loves Birthdays and he sat right by Caleb the whole time during the party! Preston was off exploring and not so interested in the cake.


1 comment:

  1. Jennifer I will be praying for Preston and for you. I pray that he does want to eat and drink something and that the oral aversion will not play a huge role. I pray for peace and calm for you. I know that he will come out of all this ok and feel so much better in the end. It is so hard to watch our babies suffer and you are so strong and so brave! I have faith in you and the Dr.'s!

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