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."

Today I spoke in church. The topic I was asked to speak on was seeking the spirit through our trials. I look at my trials at hand and today I feel grateful. Yes it's emotionally draining to live this medical life style but I will do it, and I will try my hardest to do it with peace and love in my heart. I am sad. I learned a few days ago that a fellow medical mommy & daddy were faced with the decition to withdraw support from their little guy Carter. They chose today to set him free from his sick little body. Im not so sure that I could be that strong. I admire his mama for the faith and the strength that she holds. I know that the next few weeks will be difficult for their family but I also know that they will make it through because they know what true love is. My deepest condolences are offered to them. My heart is sad for them. I will hold my Jonah oh so tight tonight for I do know how short life is.

My Head Hurts!

Ugh! I have a hospital hangover! You know the kind of headache you get when you haven't eaten right and have had no rest and have been spinning on emotions....yeah, a hospital hangover.

The Pulmo doc just called. Jonah's biopsy results looked good. His sputum is not growing substantial bacteria but this is all very good due to the fact he was hardly housing any mucus during the bronch... I have to admit it but I think all these meds are actually starting to do their job! I feel at ease. It's a great feeling!

Jonah will have to have his adnoids out. They are HUGE! I got some very neat pictures from the procedures. We are still waiting on his PH Probe results but I have a feeling that it will come back fine. I hardley saw the numbers on the box change. The highest I saw was 7.5

Update

Np Getting J ready for procedure

I am so happy to report that Jonah did great in the OR! All three procedures took less then 2 hours. During the bronch, the Dr said that he showed a little bit of red in the lungs indicating irritation but she said that he had nothing down there compared to his last bronch! This is to good to be true news.

We are staying in the RTU at PCMC. We have officially stayed on every floor of the hospital. It has been such a long day. Jonah has already pulled out his pH probe and broke the machine. he now is wearing restraints and I am hoping he will soon fall asleep.