Sassy, Sassy Little Miss. Mo

Morgan is sitting on my bed next to me, as I am laying on my bed, blog stocking, she picks up the brush and starts brushing my hair to "help me look like a princess" I must add that it feels wonderful, it's like scalp therapy. Isaac comes in the room and mentions that my hair is getting long and I made the comment that yes it was getting long and I needed to cut it. My sweet little Morgan is twisting and pulling my hair as tight as she can then tells me that she needs me to get the scissors, "you are not cutting my hair!" I said to her, she then replies "well what? you are the one who said you needed your hair cut!"

Jonah and his adenoids

So we were asked to be here no later then 10:45am for check in only to sit in the pre-op for THREE hours! I was irritated but I have been here enough to expect that there might be emergencies that take firsts over J. The Dr. came out after he was finished and said that Jonah's tonsils looked great and were small, so he didn't bother messing with them. His adenoids however were big and were removed. This s somewhat good news, this means easy peasy recovery!

We are now in J's room or his dungeon! This room has no windows. he is very onrey and unpleasant. This usually occurs after he has been sedated. He wakes up for a few moments only to scream and cry, and scratch my face a few times, then he fall back to sleep. kind of funny. He is sating poorly at the moment. he is on 1.5 Lt of oxygen and they won't let us go home until he is at base line, which I semi fudged and said was .5 Lt, I am having constant pep talks with him to remind him of the parade he will have to miss if he doesn't start breathing,lol. The Dr said we could go tonight if he is doing better. Cross your fingers!

Chocolate???

I wish life were less like a box of chocolates.

I got a routine call this afternoon, that ended up being not so routine~ The woman who worked at the hospital was calling to ask questions about Jonah (wondering what meds he was on, if he has allergic to anything) Then she gave me the time I was to have J checked into the surg room, then, she asked me about some strange disease they would also be testing Jonah for. I had no idea what she was saying, I wasn't familiar with the disease. She asked me to hold to make sure she had the right paper work. When she got back on the line I asked her for the spelling, and kind of shocked I hung up the phone and called our nurse and doctor.

Neither had ever heard of it, but while I was chatting with the nurse the Dr looked it up, I was also googling it (big surprise) He read off some symptoms and I read some symptoms. It was kind of scary. It is called Mucopolysaccharidosis. A more common name for this uncommon disease is Hunter Syndrome. I have been reading about it and I feel 99% sure this is not something Jonah has, but that other 1% is leaving me restless and making me have huge anxiety. Why would they suspect Jonah of this disease? Is it his stunted growth? His learning delays? I just was not expecting the receptionist to lay this on me.

So tomorrow is the big day. The day that once again Mr. J will have to be intubated yet again. hmmm, I think I know why he has air way issues ;) I am hoping and praying with all my heart that this will be a beneficial surgery. If it's not I just don't know what else to do. I am putting full trust in these doctor's that they will help my boy.

Jonah is coughing again. It is my fear that his lungs are failing every time I hear this cough. Most likely this isn't so, but it is still scary to me. I have read a lot about lung disease, CF, lung cancer and non CF Bronchiectasis. Yes, I agree, it is very unhealthy to know too much, especially when the Internet is so good about posting the most extreme cases. Oh my, this is just what happens when you have a chronically ill child. You become super paranoid, over barring and crazy!

I'm lucky to have friends who put up with me! XOXO

This and That

J's summer hair cut

I am so excited! I finally made my blog into a book! I will have it in my hands by the 22 of July! It is one of those things that I have been saying I was going to do and never got to it, but alas it is done. A year and a half of blogging entries all combined in a hard cover book for my children to one day read. I wish I knew about this wonderful world of blogging while Jonah was first sick. I wrote some stuff down but not enough. I am now at a place where I could handle it, and now I have blocked so much of it out.

I concurred months and months of filing today. Along with my bill statements that I file I came across some of Jonah's hospital records. (I request a copy after each hospitalization) The kid has over 1050 pages of medical procedures and detailed hospitalizations...Maybe I should turn that in to a book! (just kidding!)

Jonah will be admitted on Friday to have his adenoids out. I'm getting antsy. I hope he will only have to stay one night instead of two. I am gearing up for his pep talk on behaving while he is in the hospital, and to keep those Sat's up! I want to know when he will need to be there but of course I have to wait until the day before to get that info...Oh wait tomorrow is Thursday...I can wait one more day! I went to the store with my friend Teresa and stocked up on Popsicles. If you or your child has ever gone through this PLEASE leave me some advise.

Update

Oh my, I have missed my blogging world so much! I have lost my Internet access card and bought a new one but I can't get it to work for me...just my luck. So today I'm thanking my Gma for letting me borrow hers while she tends my kiddos!

Update on what's been going on.
Alright so Friday Jonah goes back into the hospital to get his adenoids out and quite possibly his tonsils too. He will need to stay over night for observation and we are hoping it's just one night! Kinda sad it fall's on the day Utah is celebrating the 4Th of July. Guess we will be passing on the parade and fire works...maybe Isaac will put on a show for us in the front yard.

On Thursday Jonah had his transition meeting...more like I had a transition meeting while he played in a room full of toys to feed his sensory needs. I can't believe Jonah will actually be participating in a special ed preschool. I knew this was coming, I guess I just wasn't mentally prepared for this whole meeting and set up. I had plenty of time to get all my questions answered. I still have some reservations about the special ed class being mainstreamed with the "normal" kids. In time I'm sure I will get over it...time seems to help everything.

What to do???

It's hard to stay positive when your pissed. I am so tired of Jonah being sick. Okay, that's a broad statement! What I mean is I'm tired of him catching or creating illness every other week! Yes I know he has a lung disease but come on! I have never seen a child with "something" always going on. I'm tired. He is off of his sleep meds which is a good thing but nights like last night I would sell my soul for some sleep!

I called the Dr Monday like I had posted and she wasn't there. She called me this morning and said it sounded like a GI problem...hence I had mentioned that he was sick and his feeding tube was leaking around the site, I might add that this happens to most who have feeding tubes. I said "no, it's not a GI problem, It's a coughing so much he is throwing up problem." To be honest I just don't know how to handle it. He has been coughing like crazy and has mucus overflow. I started him back on steroids but I see no change. So the Dr says he probably has a sinus infection...I don't agree, but I'm not a doctor and putting him on stronger antibiotics then his daily ones sounded good. At this point anything to stop the snot factory.

What do I do? I feel like the doctors who are seeing him are sick of dealing with his problems. I know I'm seeing one of the best pulmonary Dr's in this area, and I love her dearly, but I can hear the frustration in her voice. Does she not know I'm just as frustrated? Ugh, now I'm in tears. i have no clue what to do for him. I made a goal not to have to call her for 3 months, but when it got critical on Monday I had to make the call. His Sat's were in the 80's and the...COUGH!

not what I planned

Well going back to work didn't pan out how I thought it would...

Jonah was running a fever on Wednesday of 102.5 by Friday the fever was gone but he developed a horrible cough. Now coughs are hard for me to diagnose, (Perhaps that's because I never went to medical school) It's hard for me to tell whether it's a lung disease cough or a contagious cough. I believe its just a lung and Jonah thing, but hmm...who knows? He is coughing up SO much junk he is choking on it and throwing it up. (that's good he's removing it out of his lungs but yuck!) I do know that over time people who suffer from Bronchiectasis will develop a phlemmy cough, but I believe it is a gradual thing, but once again who knows? I called Jonah's ped and he's out of town. I called Jonah's Pulmo DR and guess what? She is also on vacation. GRRRRR! I wish everyone who is involved in Jonah's care would book vacations through me first. I heard back from the pulmo nurse and she said that the Dr wants him back on (big surprise) STEROIDS until she comes back to the office on Wednesday.

Back to the work thing, my friend who was so wonderful to watch him (thanks girl!) called me a few times but I missed the calls (bad mommy) When I saw that she had called I immediately called her back with visions of fire trucks and ambulances in her driveway, When she answered she informed me that his lips were blue. She put him on O's and he still wasn't feeling better.He was coughing so much, I could tell she was worried. I went over to check on him and he just fell apart. So I took him home. He has now been sleeping for 4 hours, I will just let him sleep. I was going to take him up to the ER but I think I will hold tight till he wakes up. Wish us luck it's not going to be one of "those" nights!

***

Tomorrow I am returning to my old stomping grounds...by that I mean work. I agreed to do some subbing here and there through the summer. When I agreed I thought no big deal, but now that it's tomorrow I am feeling slightly nervous. I know how to do the job, it's just that I don't know all the teachers who are now working, and they don't know me. That usually is a recipe for feeling uncomfortable like the first day of school.

Wish me luck!

happy

Believe me there has come a time in my life when I thought I could never do these things that I now must do for my J. I have recognized my inner strength. I think it's wonderful to look back and see all that I have been able to handle and push through. This is not an easy journey. Having a "normal" healthy child would be much easier, but I often have to ask myself "would I have it any other way?" I am so proud of the woman I've become, the knowledge I've obtained, and the close relationships I have made with my children and again with my husband. I am not the same person I was 3 years ago. I have learned to stand up to doctors, insurance companies and so called friends, who dropped me when I needed them most. I have learned to listen and to pray, to be respectful and secure. I have found amazing friends who I can relate and share my feelings with. I have become so much more awear of the special needs in my community and have been given the opportunity to share what I know with families just starting out on this path. I'm not sure how they find me but I love to share and inspire newbies. I am so grateful for all that I have been blessed with. Some might look at me and think what have you been blessed with? In their eyes they may only be looking for worldly objects which I do not posses, but if they would look harder they would see these amazing blessings and small miracles that I get to enjoy every day.

It's been fun!

It's been so much fun lounging at the pool, playing in the water, going on fun "day" trips, just leaving the house without worring about the oxygen. However the time came this afternoon when I had to stick those tender grip stickers back on those chubby cheeks and resume back to O2 life...

It might be my fault. I was so happy to hear how well everything went during his procedures, I have slacked off through out the day on giving that extra treatment I usually give. So instead of 3 he was only getting 2. Bummer. Though his sats droped and work of breathing has increased, I don't here anything alarming when I listed to him with the stethascope. So that's reassuring!

I am so saddened by the death of Carter. I just feel for his family, and those close to him. I read a quote that another blogger had left on Carter's blog. It made me smile. It read: "Some people dream of angels, you got to hold one."