Thursday, March 28, 2013

An Update on Ryan...

I haven't been blogging very much the last week....



 Most of you know, but for those of you stopping by and don't know...my son, Ryan has Miller Dieker Syndrome and faces many challenges.   Last week (Wednesday) he was admitted to a hospital an hour from our home and found out that he had a UTI and some upper respiratory stuff going on.  He stayed on the pediatric floor until Friday and received some respiratory therapy (Medaneb, VEST, Breathing treatments, and Inexsufflator treatments) and IV antibiotics.  He came off of his oxygen Friday and seemed better so they sent us home that day.  I really wanted to stay one more day because he was running low grade fevers still but they thought it would be best for us to go home Friday.

I was glad to be home to see my husband and my boys but as the weekend went by, Ryan's respiratory status continued to get worse.  He wasn't wheezing when we left the hospital Friday but by Saturday he was wheezing pretty bad and Sunday his lungs were sounding awful!  He was having a hard time breathing at home so I decided it was time to call the Doctor.  I called the Doctor's office Monday Morning and they were able to call him in a chest x-ray at our local hospital.  Just as I assumed, he had pneumonia.  We were transferred back to the hospital an hour from our house and spent Monday to Wednesday afternoon on the regular pediatric floor.  

One tired Mama!!!  I haven't worn makeup fixed my hair or put on real clothes in over a week and if you know me...that is not me!!

Wednesday morning, he had an awful morning and somehow his hip popped out of place and was giving him a lot of pain.  I moved his leg around and heard a big pop and thought that it was still out of place so they did an x-ray to see what was going on.  While he was crying in pain and coughing, he threw up twice and now we think that he may have aspirated.  His respiratory status changed during this time and he started to need more oxygen and work harder to breathe.  He also had a bad seizure Wednesday morning and then another one Wednesday afternoon.  With the seizure, the need for more oxygen and him working harder to breathe, they decided to put him in the PICU (pediatric intensive care unit) so that he can be monitored more closely and also because they had to turn up his bipap settings a lot higher than they were on the regular floor.  


The Doctor came in and explained that the Viral Infections that children are having this season seem to be lasting longer.  :( Boo!  They are being as agressive as they can be here and he seems to be tolerating the treatments well.  His lungs are sounding a little better today and they are also watching to make sure he is improving from the possible aspiration from vomiting yesterday. 


Our sweet Ryan is such a little fighter and is doing well.  We were both able to rest well last night (better than the two hours that I got the night before) and he seems comfortable.


The plan is to maybe start him back on some of his feeds with his formula in his feeding pump (he is receiving IV fluid and pedialyte on his feeding pump for now) and to continue respiratory treatments every four hours and wean his oxygen as he tolerates.  He is now on three liters and tolerating that fine over his bipap.  They are also probably going to start weaning him off of the bipap some during the day maybe tomorrow when he is awake.  He seems to need more support when he is asleep and he has been sleeping a lot.  The Dr has not come in yet to discuss the plans for the day but I assume they are just going to monitor him closely and keep him comfortable today and also watch his temperature.  His last temp was yesterday afternoon and so far he hasn't had a temp since then.


We do not have a plan for going home yet and I want him to stay here until we know he is on the up swing of this and getting better.  The doctor talked like it would take him a while to get back to his baseline and that he may go home on the higher bipap settings (he is on the bipap every night normally when he sleeps) and possibly even on some oxygen.  


I really do appreciate those who are praying for our sweet little guy!  The calls, texts, food, visits have been so wonderful and we know that we are loved and that so many are praying for his healing.  I will try to update again tomorrow unless something changes and I need to update sooner!  

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10 comments:

  1. Wow, I seriously still don't know how you do it but you do. Praying lots for you guys and sending virtual hugs!

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    1. Thanks, Michelle! I love virtual hugs!! :) I appreciate the prayers!

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  2. Julia, blessings and prayers for all of you from me here.

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    1. Thanks Cindy! I really appreciate the prayers and hopefully we will be able to go home soon!

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  3. So sorry for all you've had to go through. I'm relieved to hear he's feeling a bit better. Praying for you and your little man!
    Monica
    http://happyandblessedhome.com

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    1. Thank you so much, Monica! We sure do appreciate your prayers!

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  4. I'm sending you prayers and a quick recovery for Ryan. We found out our 6 month old has MDLS just 6 weeks ago. Leo was in & out of the hospital the past 2 weeks for RSV & rotavirus/ dehydration and was released again yesturday. I can tell he's happy to be home and I bet Ryan can't wait to be out of there too. Your updates have been very encouraging for what you have done for Ryan in just 5 short years. I only hope I can provide the same care for my little Leo. We have to be strong mom's and a loud voice for our fragile boys. Hang in there and keep the updates coming.
    Mary

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    1. Thank you so much Mary for your sweet and encouraging words! I am so glad that Leo is home where he can be comfortable! It is hard to be in the hospital for days! I will keep Leo in my prayers!

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  5. Bless ya'll! Poor little guy! Praying for strength and healing for all of you!

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    1. Thank you so much, Luisa! I really appreciate your prayers!

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