Saturday, April 23, 2011

Lots of Doctors

This past week has been full of doctors appointment Thank God medicaid is good till the end of the month..Whoa that would have been a lot of $35 co pays :-/

1st off Jacob broke a 20 day record of not vomiting. Friday, while Jack has Jacob at his CECO therapy Jack was rolling him and he decided to bark all over Jack. Jacob woke up extremely congested that morning. So, I guess with all the vomiting and congestion...Jacob decided to develop a little respiratory problem. By the time Jack got home with him that afternoon. He was breathing really really fast, retracting, nasal flaring, wheezing,and had a low grade fever. Doctor Mom is pretty used to this from the last episode. So a very long respiratory treatment of Albuterol, Atrovent, and Pulmacort made things a little better. I also had some left over steroids from his last he got a dose of that too and we topped it all off with some decongestant nose drops. Ta-da Jacob was "fixed" without an ER visit.

Jack took Jacob to the pediatrician on Saturday morning...he was just not fixed good enough to make Doctor Mom happy, plus he continued to vomit. His tonsils were huge and red...they checked him for strep...negative. So he left the doctors office with a 5 day course of steroids and antibiotics to treat for aspiration pneumonia.

He stopped vomiting by Sunday, so today makes 7 days vomit free again. YAY! Monday we drove to St. Pete to the pulmonologist. It was me verse 3 kids...I could have used stronger crazy meds that day. Pretty much she did nothing of importance for me. All his meds are the same. She said is left upper lobe seemed diminished...which I found concerning since usually all of his atalextisis and scaring are in the right upper lobe. He was course sounding but no wheezing. She told me to continue everything he was already put on. She recommended he get a gastric emptying study..but apparently the GI doctor has to order it??? She still very concerned about his reflux. She says she can't keep him healthy if the reflux is not controlled. I kinda felt like things were going great until he decided to vomit last Friday....she is also sending us for blood work to test his immune system. She said she does not think that is the problem, but wanted to rule it out.

Tuesday was not such a bad day. He seen his usual speech therapy bright and early in the morning. We did not do any food trials (I forgot it at home) plus he was kinda whiney and congested still. Then he seen his physical therapist. Oh and the CharleyWrap came in the mail on Monday! I know I did a little mini post from my phone about it on Monday. I have not really played with it a lot. I need to cut the hole for the g-tube, but didn't want to do so until his tube was replaced.

Wednesday we seen the neurologist in Brandon. Tuesday night I think I witnessed the 1st "seizure" I have ever noticed him having. He was crying in his bed. It was 9-10pm at night. He had turned himself from his stomach to his back and was on his side in a weird position like he was trying to roll back over. I picked him up and he did not really react. I brought him to the living room for some cuddle time. I noticed his eyes were doing some crazy things. They would shake back and forth and all over then both would point down to the left where you could no longer see his pupils. This went on for several minutes. He had not had his seizure meds fro the night so of course I jumped up and gave them. So, the doctor agrees that she think he may in fact have been having a seizure. She up his Triliptol to 3ml 2X a day. She also gave me a referral to see the physical medicine doctor that deals with the orthopedic side of his condition. I have to make the appointment on Monday. We talked about his hips getting progressively more tight no matter how much we stretch. She thinks that over time and with the 2nd option of the psychical medicine doctor we may take him off Klonipine and switch him to baclaphin. She also made a referral for him to see another ENT doctor for a 2nd option of his tonsils and adenoids.

Thursday's appointment was all about me :-) Didn't gain any weight for once, I also didn't loose any :-( Blood pressure and labs that were taken all came out normal. Yay! Fat girl has normal labs and BP! We changed some crazy meds around. I am weaning off one and switching out for another. I am also going to try and be better about taking the anxiety medication twice a day like I am suppose to. I also got my very 1st pack of birth control pills EVER! LOL Figure fat crazy girl should not get pregnant while on all her crazy meds. It is weird how just a few short months ago I wanted to have another baby so badly and I hated that the IUD was in so I could not make that choice without going to a doctor, to totally having absolutely no desire to do any baby making anytime soon. :-) We need to get everything else squared away with the kids and ourselves. Trying to live life again.

Friday was the big day. The day I have been waiting for since June 2010 when a big nasty long tube was placed in my baby. I battled the last 10 months or so with a foot long tube hanging from my son's stomach. It was hard to hide and quite annoying. We became very use to it and didn't worry about it falling out after a while. The tube was finally just so worn that it was springing leaks several times a week. The tube which was at least a foot long when it was placed was hardly 5 inches long after many many cuts to bypass holes. Jacob is not the proud new owner of his very own Mickey-button. It is weird and feels less secure than his old tube. I am totally paranoid again that it is going to just fall out and I won't be able to get it back in. It is scary because he can't take food by mouth like he used to. When he 1st got the tube I still worried about it coming out, but I knew he could still ear without it. So, hopefully over the next few weeks the paranoia will ease.

Andrew is a walking champ now. He walks more than he crawls. He is pulling up to stand on is own without the use of walls, furniture, or people. He is loving the whole walking thing. Now apparently since he has a new view on the world he has also decided to leave his wrath of destruction in a greater abundance.

Ava is now singing her own version of her ABC's That goes something like this...and you can't tell her otherwise "a b c d e f g h i (mumble mumble) r t (mumble mumble) w x y z now i know my ABC's next time won't you sing with me sexy" BTW everything is "sexy" lately silly child.

My kids are with my sister for Easter. It will be my 1st Easter without me being home with the boys. I really enjoyed having Easter off last year. Oh well I will end my long post now since I have to be up bright and early this Easter Sunday at 6:10am and not a moment sooner LOL Happy Easter!

I am so very tired I am not proof reading this so I hope it at least makes some kinda sense...even though most of my posts are full of poor grammer and spelling LOL

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