My venting soap box

I just need to vent today. I don't know why I live in this pretend world that everything is fine and good. It sets me up to feel discouraged and saddened. Jonah is a lot of work. I start thinking about the future and wonder will it get better? Is this how life is going to be & how long can I endure all of this? Jonah finally is finished going through his withdrawals from the last dose change of steroids. He went through them for 3 whole days and now, it being Sunday he was supposed to be cut another cc. I did not do it, I will call the Doctor tomorrow but I just don't think his system can handle that shock again. I hope I don't get in trouble! Dr. Pfeffer reigns with an Iron fist!

It would be so different if I were a stay at home mom like "regular" stay at home moms. (the kind I pretend to be) I hate worrying that J might pick something up if we go here or there. At the same time I hate being at home, it just reminds me that this is how our life really is. Its hard to live in pretend land when you are dealing with feeding pumps that keep getting clogged and 40 min respiratory treatments. I honestly thought that when we came home from Denver children's hospital Jonah would be a new boy. That all of his problems would be solved and this would all be "how Jonah used to be." I heard the doctor tell me stuff but I am so good at tuning stuff out that I don't want to hear, I think Ive mastered it. Now it has bitten me in my bum. Don't get me wrong I am glad Jonah has a more accurate diagnosis, I just really don't want that one.

I am just tired and upset, I just want a normal life, I want 2 healthy kids, I don't want to explain J's illness anymore I don't want to be fake to everyone, pretending that I am handling this well. I'm not. I just want to throw my hands up and give up.......But I can't. Of course I would do anything under the sun for both kids, it just gets wearing and difficult when you are dealing wit SO much for so long. Maybe this is what I needed just wright a long poor me note and have a good cry. Life... It's such an interesting path.

A Very Successful Day!

Today has been a nice calm day. Around 10:00am, the kid's and I were going to go to the Living Planet Aquarium. I decided to take the long way that went through town just to pass some time. On that road trip we saw a park, it looked like a lot of fun and so I gave Mo the choice the park or the aquarium. She chose the park so we pulled in found a parking space and got out to play. The slide ended up being "to hot" so we went on a walk around the soccer & baseball fields. This park was so beautiful. I think we will go again tomorrow, there was also a skate park that Im sure Isaac will want to hit.
When we got home it was close to noon so I hurried and made Morgan lunch and gave Jonah some of his delicous formula.mmmmmm! After lunch I layed Jonah down and let Morgan stay awake and watch her fave, Signing Time. I snuck out front so I thought and finished planting some plants we picked up a week ago. Morgan Joined me and "helped" me. (she moved the dirt around with the shovel) While we were out side the mail man came by. Morgan loves taking the mail from him so it was great we were outside. He handed her 2 "special" packages. To Miss Morgan the first one read, the second, Morgan Andrews! She new they were for her! She ran inside (with dirty hands) and started to rip one of them open, I had an Idea it was clothing so I had her wash her hands. She was so excited! Thank you all for caring enough about our little girl and sending beautiful pictures, letters and fun stuff! Okay sorry getting carried away, while opening fun stuff, Jonah woke up and I decided to take them swimming. I didn't think we were out there to long but my face is kind of red, and when I was retaping J's oxygen I could see he had a cute little O2 tan line! When Isaac got home I ran to the bank, came home had dinner, then strawberries for desert (yumm) and put the kidos down for bed. They both fell asleep right away! I would call today a very succesful day!

Getting Out Of Our Funk

It has been a rough week. By now you would think this family would be use to the chaos that usually follows being discharged...nope.

We decided it would be best if we all went out and did something as a family. I know I really needed to get some fresh air and Isaac needed to get out of his funk too. It was a wonderful idea, until we realized we left the keys in our locked car.
Being optimistic for the most part, we let it roll off our shoulders. I even called a few places to find the cheapest rate. Yes, I sat there in the middle of this barn thing going through the Yellow Pages. The lock guy came out fast. we only had time to feed the ducks and walk back to the car to meet the lock guy(Tod). After we got all that figured out we finished our late afternoon at the farm. We went and visited the horses, the lambs, the roosters & chickens and finally Morgans favorite the cow's. This time the cows that were babies a few weeks ago now are teenagers. They were very moody and talking back. I have never heard cows mooing back and forth, but these cow's were. Morgan and Isaac let the cows give their hands kisses. Isaac had to talk to Mo a few times because she was sticking her whole arm into the cows mouth trying to "brush his teeth." Isaac had Jonah pet the cow for a photo op but what I saw through the lens freaked me out... the cow was gnawing on his hand while chewing grass, I pulled Jonah's hand out and J had wet grass goo all over his fingers...double gross!

We then stopped (broke the diet) and picked up a $5.00 pizza. However I am happy to report we did not even eat the whole thing. We stopped when we were full and through out the rest...not trying to be wasteful but we are really working hard at having only "good for you food" in the house. On that note we are hoping to get our garden in some time this week. We are really starting late this year but better late then never.

I am still waiting for Jonah's CPT vest to arrive. My hand is killing me from doing it manually. His treatments take a long time to give but I try to multi task while giving them. For a day or two he was even holding the nebulizer by himself...now he is bored with that and has started to gnaw on the tubing instead! Yay!!! Jonah is finally breaking in his top two teeth, okay well not breaking in just yet but I can at least see them! We are really happy about this one. Just shy of 19 months old.

home sweet home

I can't seem to get over how fast time can pass. I had a little reflection moment and I am just amazed. I see people who I have not seen in a good year or so and I feel like it was just a couple of months ago. It is absolutely crazy to me how fast this past year has gone by. We are almost in June! Crazy.

Things with Jonah are so so. He is doing great health wise but he seems to be struggling more so with his oxygen needs. Before we left to Denver he was doing really well on room air for the majority of the day. Now I have try to take him off of oxygen to go out side and his RR falls into the 85's That's okay for some but Jonah is required to stay above 92. His sleeping times are way off and so I am trying to be patient and work him back into our routine. Going to sleep at 9:30pm is not part of our routine.

Morgan is so happy to see the sun has come out to play. (so am I) I hate to admit it but the girl is crazy! How can a three year old talk about nothing for as long as she does? She has a hard time pronouncing some words to the point I don't even know what she is saying but she says it over and over until I just agree with it. Morgan is a very funny girl, she always keeps us on our toes. I think she has mastered how to wrap her daddy around her finger. Me... well I am not! Okay maybe a little!

Pictures from the last week

day 13 at a hospital...help!

I am so tired that now I am in the stages of everything is funny... so funny, though this time around I did skip the stage where I start to invent things and then share my ridiculous ideas with the doctor.(Thank goodness, Dr. Pfeffer might of admitted me)So much has been going on but yet I have long periods of time that I am so bored I don't know what to do with myself. This is day # 13 of being in a hospital and yesterday was the day I needed to just leave. yep at 3:00pm I left and went home 2 hours earlier then usual. I thought I would surprise Mo but when I got home she was in a dead sleep. (Thank you Alex for taking her to the zoo! She had a blast.) Isaac was doing yard work so I decided to get a much needed pedicure. I still can't believe I did that. It was a mother's Day gift from Isaac from last mother's Day! It was so nice to just sit there and get pampered. If it weren't for the jabber jaws sitting next to me I may have dozed off. Ah it was just a breath of fresh air to be carefree for 45min. I later,returned to the hospital feeling so much better.

I don't think I ever posted Jonah's diagnosis, don't continue reading if I did. If you are interested which you should be because it's Jonah, then follow the link, and indulge.

Jonah has a disease named Bronchiectasis.

Morgan is finished with dance until summer. She had her dress rehearsal on Thursday night. It was just mom's mostly for the audience. I was responsible for changing her into all 3 costumes which I did successfully! (I was a bit nervous with all the pinning that was needed) Through the tap & ballet dance Morgan walked on stage in her line and just played with her hair, her panties, her tutu... just in her own zone. It was funny though! Then for the finale She4 went on stage but didn't budge far from the side curtain. I could kind of see her face and it broke my heart. She was embarrassed and did not want to be up there. They ran through the finale routine a 1/2 dozen times and finale I just stood up (disregarding my friends advise) and went back stage and just hugged her. I asked if she wanted to go back out and try it again and she said no. We walked back to the car then stopped and got her an ice cream. She did not want to dance at the recital and that was just fine with us. I want Morgan to continue to dance and have fun while she is doing it. I don't want to put my three year old in a position that she feels embarrassed or uncomfortable in. Though some may feel like I gave her exactly what she wanted...I don't care. She is only three and It was to much for her at the time. We will try it again in summer and maybe she will want to perform then.

catch up

This week is moving by to slowly. I seriously am having trouble keeping up with the days. I feel like Wednesday was a few days ago. Hello world I am already on Friday. Sorry I am a little sleep deprived, not by stress or worries but because of just not being able to fall asleep. I usually take melatonin but with J staying up at the hospital I never know if I will be needed in the middle of the night. So it goes.

I have been so blessed by the loving nurses and Techs here at Primaries. I have got to know many of them, and it is so wonderful to see them again. There are 2 that I adore. Kim and Ange, these girls are way to funny, and even though we have not been fortunate enough to have them take care of Jonah man this time around, that has not stop them from coming by a few times a night to check on him. It makes me feel so wonderful to know that he has people here who love him, and people here who really care about how he is doing. So Kim, Ange... from the bottom of my heart I want you to know how thankful I am that we have met you, and grateful that you have been hypnotized by Jonah's charm. We love you both so much and want you to know that because of the way you take care of all our little patients their mommies go home knowing that their babies are in good hands!

Morgan is still struggling so now I have a favor to ask...If you wouldn't mind sending Morgan a card or a picture that maybe you, or your little ones have drawn, just a letter that she can open and get excited about. I know she has had to endure a lot from all of this and she still continues to. I just thought it would be fun for her to get the mail and see that she too has got something important. If you have the time to do so we would be so happy!

Tomorrow I will post new pictures.

PCMC

We were admitted yesterday morning at PCMC. It was a very boring day! Jonah was fine when we got here but when he wanted to get down to crawl around I think reality set. It is very hard to crawl when you are hooked up to a sat monitor, O's and an IV. Needless to say he was kind of unpleasant to be around. I kid you not, he threw a tantrum(because that's what he does now)for a full 4 hours with mild breathing breaks in between. The nurse turned up his oxygen and left the room. Oh how badly I wanted to trade her places! in the evening,I went home for a bit. It was time to put my wife hat and my mom to a 3 year old hat back on, but it was useless. Morgan was upset that I was gone most of the day and did not want anything to do with me. She became best buds with daddy. So Isaac took over and had me come back up to the hospital sooner then I was planning to. I got back up here around 7:30pm When I walked into his room I was a little taken back. There was an RT standing over his crib and it looked like Jonah was convulsing... Not convulsing...they started doing CPT with the vest. Now, Jonah's doctor came in around 5 and told me she wanted to try it, but I thought that meant in a couple days. I should have known better!

Morgan is having a hard time with Jonah being at the hospital and mom being there too. I think she is confused and scared. In the past we have told her that Jonah was sick, that seemed to be good enough at the time. When my friend Diana was ill and slowely dying we made the mistake of telling Morgan that Diana was sick too. So now she knows that Diana was sick and now we don't see her any more, and I wonder if that is why she is so worried about Jonah. Last night Isaac and I changed the story. We have now told her that just Jonah's lungs are sick and he is here to get better so that he can come home to play with her. This morning she repeated the story to daddy. This is a lot for her to understand. Hey it's a lot for me to understand!

Our Final Day in Denver

Today we will be discharged and going back to the 801. Right now we are playing the infamous waiting game. Jonah has a disease that is like Cystic Fibrosis. Although the treatment plan is the same it has a different course. Thank goodness! We arrive in Salt Lake at something we will then take Jonah up To PCMC and he will be admitted there for 2 weeks. This will be a reoccurring thing in our lives. Every two months Jonah will have a two week stay up there. The doc down here called it a "tune up." He will once again start having CPT multiple times a day. When he gets older/bigger they will have him start wearing a vest that will shake the snot out of him...no pun intended! He had a biopsy and we are waiting for those results. So that is our latest not the greatest update. I know it sounds strange,
but this is what I wanted and needed to keep moving forward. Jonah finally has a diagnosis! Now I know as his mom, where to start...unfortunately it is a long stay at Primary children's. Luckily we have a great posse up there who know and love our little Jonah man!

Day three in Denver- TADAH!!

I will keep this short and sweet since it has been too long of a day... I think we have a diagnosis! I can't pronounce it but I will end with this- He is being Weened off of steroids!!!! Oh today is a good day! His diagnosis was a huge surprise that The Pulmonary doctor was not counting on. His direct quote "It all makes sence now" To Be Continued...

Day two in Denver-part B

The IPFT only lasted an hour and a half from the time Jonah was sedated. They got all of the information that was needed and he still slept another hour and a half. I would usually enjoy this long nap time, but when you are sedated at the hospital they will not let you leave until you are fully awake and have taken some food. So needless to say, we were there a while. During his restful sleep, I had many visitors who wanted to meet with Jonah and I. The one who I really was waiting for was the attending doctor who was overseeing Jonah while we will be here in Denver. Her name is Dr. Deiterding, I love to say that Deiterding. Anyways she came in and went over the test results with me...Gulp! She said that they will still learn more with the CT scan and the Bronch that they will be doing, but so far they think they have ruled out this all being just a bad case of Asthma like i was hoping for. They are leaning towards a diagnosis called Bronchial Obliterans. Jonah's pulmonary doc in SL had a hunch. It is not a very common dissease. Lucky us... so not many doctors are familiar with it...Jonah's SL doctor is so that is what is important.
Well Jonah is fasting again today and will be going back to the hospital at noon. like I said they will do the CT scan and then he will be put back on a respirator for the Bronchoscopy. Due to Jonah's last episode from his last Bronch, he will be admitted today. I knew this was a strong possibility but it stinks when we get down to it. I will stay over night with him and Mo will stay at Gma & Gpas house. On the up swing we did have a wonderful tour of down town Denver last night, and Praxair came out and brought us much needed oxygen tanks. I will write more when Jonah is being Bronched, Pray ,pray, pray that he goes through this like a pro! Love you all!

Day Two in Denver-part A

Well it was a rough start. As it was just Jonah and I this morning, we got up very early! (too early) Anyways Jonah had a bath and was dressed and we went down to the kitchen area. I grabbed a banana and put Jonah down to crawl around. I forgot that he too was probably hungry since we Had to fast him for the testing today. He started crying when he saw me take a bite, I quickly hid the fruit and put him back in his stroller and pushed him around the huge dinning room while pushing him I was shoveling the banana in my mouth. I'm sure it was quite a site. So then I took him down to this amazing play room. He was still a bit fussy due to his hunger so I let him do what he does best...throw things. They were just those small square texture blocks, but he loved it. He sat out on the clean up part. When were walking out of the RMDH his concentrator (o2 Machine) just shut off! So our travels to the hospital were super fast! I talked to Praxair and they said they would send someone over to look at the machine, until then they told me to take some tanks from the hospital.
Jonah is in testing right now. It worked out nice, it is a 2 room thing with a dividing door that has a window, so because i was not sure they said this was the best option. Now I can come and go as I please. I left while they were setting up the equipment on him. they gave him the sedative and he was out in five minutes! It was nice, i was able to rock him to sleep. He is such an independent sleeper I rarely have these moments. It was a nice feeling to walk away with.
I am sure they have him ready so I need to go back up and check on my little guy. I will write more tonight. Thank you for keeping him in your prayers! I love you all.

Day One in Denver

Well we made it safe to Denver. We woke up early this morning around 5:30 am. We arrived at the airport about an hour early but by the time we had checked in and took 2 very slow elevators and booked it to our gate they were just about to load the first group of people. I was the first in line due to the oxygen ad having 2 small children, but b the time I got my double stroller folded down I was some where in the middle of the line. It was kind of a joke, some nice lady let me cut in front of her so I got a somewhat decent seat. We watched one episode of Dora the Explorer before it was time to land. Not so bad, just mild chaos...It follows me!

It was so welcoming to see my mom and step dad at the gate! Morgan was so excited! Tonight she will be staying with them and having some spoiled rotten fun. She so deserves to be spoiled rotten! I admire her willfulness to go with the floe, even when the floe is not what she wants or deserves. She is a good girl and my hart is full of love for her.

Jonah's first clinic went well. I met with the attending doctor who actually read Jonah's medical file...Amazing. She caught me up on the grand plan for the week. I held back tears and took it like a mighty mom! Although I am unsure of what the outcome is going to be. tomorrow Jonah will undergo the IPFT so I have had to stop feeds for the night. He will be seen at 9:30 and the test will start at 1030
Jonah is so tired so I better get off the computer and tend to him. I will write more tomorrow so keep posted.

Oh great news We got a room at the RMDH! It is like a 5 star hotel. I feel so blessed to have this opportunity!