Thursday, November 29, 2007

Holding On

Brody has been doing okay so far since we got home. I've been having a little bit of a hard time getting that antibiotic in him. He hates it. We have to do it for 6 months so he better get used to it. Kaybri has been good. Full of energy. I have this new Linkin Park CD and she loves to dance to it and sing along. She's so fun. Other than that, not much to report. Things have been stressful, as usual. It will be interesting to see who has the total meltdown first--me or Joss. Things have been especially hard the past 6 months. Christmas is going to put added stress on us but we are trying to remain strong. I have a lot of faith in us. Things will look up!

Monday, November 26, 2007

Homeward Bound

Around noon, I had spoken to Joss and told him we would not be coming home today. On that note, he decided it was a good idea to work a little longer today. 5 minutes later I found out that Medicaid had granted our request for oral antibiotics rather than the dreaded IV. We won the battle! This means we are going home! But wait, Joss just turned his phone off for the next several hours and he is my ride home (since my "death-mobile" is being towed again). I eventually got through to him and he is currently on his speedy little way up here. I just pray that we may be able to stay home for a while this time...but my gut tells me otherwise.

Well Deserved Relaxation

Saturday, Joss and Kaybri spent the majority of the day with Greg and Sky. They went hiking in the mountains around Salina looking for a Christmas tree. Kaybri loved it and couldn't wait to tell me about it. She later went for a ride on the "Hosies!" They rounded out the night with the whole family watching movies and having pizza. Sunday, Kaybri went to church--which she loves. She gets so excited to tell you about "Cheesus" and "Present Hinky" and "The Tempo". I am so glad that she is not missing out on that experience.(A special thanks to Greg, Lori, Trista, Sky and Tandi for helping make that possible) Sunday, Joss spent the day with his buddy, Kevin. They went for a ride in the hills, had lunch in Richfield, then watched some movies they had rented. Joss has been so stressed out and high strung. I'm glad he was able to relax a little and that both he and Kaybri had such a great weekend.

The Uninsured

The plan was to attempt to discharge today but the discharge planner said that she just can't pull it together that quickly. Perhaps tomorrow. After all, she has to try to reason with the insurance company to cover that antibiotic orally. But the complicated part is that they are not our insurance company. In fact, we are uninsured. We are trying to get Medicaid through Social Security Disability but it has been a very long and extremely frustrating process. Leaving us hundreds of thousands of dollars in debt to Primary Children's alone. (Ask me how good our credit looks right now--we're sinking quicker than the Titanic) We are awaiting a Medical Review Board Hearing to sort of hurry the process but have not yet received word of when that hearing will take place. We were told in August that it would take 6 weeks. It has been 3 months. Brody is also on a waiting list for Medicaid under a Travis Waiver which is free Medicaid for anybody who is technologically dependant (a trach/vent child for example). I was informed today that Brody is at the very top of the waiting list but they do not foresee and open slot until March. So we'll just keep hoping and praying for an insurance miracle and try to "stay afloat" until then.

Sunday, November 25, 2007

Improvements

Brody is happy today. They were able to turn his vent settings back down and things appear to be going well. The doctors are looking into an antibiotic that can be taken orally for the next 6 months so we can avoid the IV all together. But insurance doesn't cover it. So the Attending called the insurance and told them they have to cover it or else they will make them pay for Brody to stay here in the ICU for the next 6 months of antibiotics. I hope its just scare tactics.

Saturday, November 24, 2007

Mild Respiratory Distress

As the day has progressed, Brody started showing some early signs of a possible respiratory infection. He's really been struggling to breathe and his oxygen sats have been dropping. We got a chest x-ray that shows what the doctors believe to be mucus plug. They turned up his vent settings a little and he has been doing better since. I guess its a good thing that we came up on Monday. Had we not, we would most likely have come today for this mucus plug or in a couple days when it became more serious than that. It seems like we are here ALL THE TIME. And we've had the worst luck with EVERYTHING lately. And I get really bitter because it seems that no matter how hard we try or how hard I pray, nothing ever goes well for us. And then I think how selfish I am to pity myself. Look at all Brody has gone through and continues to go through. I feel ashamed to think of myself as anything less than blessed.

Who's to blame?

Brody was kind of smelly this morning so I asked the nurse when Brody's last bath or trach care was. She looked at me strange and told me that she understood that I was the one who has been doing trach care- not the nurses. I said "I can't do it alone and the last one I helped out with was Tuesday morning!! He hasn't had trach care since?!!" ICU policy is to do trach care 2x/day and baths 1x/day. Turns out that since his arrival Mon, he has only had the full trach care Tues and a partial trach care on Thurs. I did give the ok to yesterday's nurse to skip it and leave it for PM shift because Brody was so agitated, but night shift didn't do it. And nobody is really sure when his last bath was. Probably just the bath I gave him on Thursday. I was not happy! The respiratory therapist came in while I and the nurse were doing an all-out trach change and said "Mom is so good at that. We should hire her on to do all the trach cares in the unit." I shot back "Well, somebody has to do it!" I feel kind of bad because I don't think today's staff is to blame. Nor yesterdays nurse. Its mostly the night shift and some poor communication. But I'm angry all the same because now he has a 2nd infection that may have been avoided....

Friday, November 23, 2007

More for us to learn

Today Brody got a PIC line placed so he can go home sooner. Joss and I will be learning how to administer his medications through this long-term IV since Brody has to have IV antibiotics for about 6 weeks. The problem at this point is finding the antibiotic that can kill the Staph infection (may or may not be Resistant Staph-we don't know yet) without causing further damage to his kidney. The doctors are teasing with the idea of going home on Monday but I'm not counting on it. I know how this place works. They said that home health will be contacted to come into the home and help out. Joss laughed right out loud. We know better.... Kaybri has been having fun here at the hospital and has been really well behaved. Sadly, she is getting used to being here. She and Joss will have to go home today. The day they leave is always especially hard for me... :(

Thursday, November 22, 2007

Can't catch a break

Yesterday, Brody's blood pressures were really high (180/120 for example). Today, it was discovered that his Clonodine patch was removed during surgery Tues and never replaced. We didn't realize this because he has many bandages on his back and the ICU staff isn't allowed to touch--only the orthopedic surgeons. But we got a new patch on this morning. Seems the surgeons failed the course in communication because they also failed to mention to me that the infection did in fact make it deep enough that it was on the hardware. However, they can not remove the hardware because Brody's ribs would just be free floating and that could be worse than leaving the tainted device inside him. The Infectious Disease people are telling us that, depending on what his infection culture grows, they may keep us here 6 weeks and continue IV antibiotics at home for 6 months. They are thinking there is a good possibility that Brody has that nasty and potentially deadly Resistant Staph Infection. And to add to the list of unfortunate news today, as we pulled in to the hospital's parking garage, the car started smoking pretty good. And the 2x brand new tire is really low, almost flat. WOO HOO! Happy Thanksgivng! :(

Wednesday, November 21, 2007

Happy Boy!

If Brody was able to walk or stand, he'd be all over the place today. He is kicking his legs and flapping his hands about 100 MPH. He is very happy today. He has no need for pain meds even though he had that procedure last night. He looks great today! Better than he has looked in months I would say. The ICU docs said that they think that he may go home at the end of the long weekend. That would be wonderful. Joss and Kaybri are on their way here so we can celebrate the holiday as a family. The hospital is offering a free turkey dinner with all the fixin's. I'm not expecting it to even compare to our usual dinner. But I still have a LOT to be thankful for this year!

Tuesday, November 20, 2007

Looks Ok

The infection wasn't too bad or widespread. They only had to re open half the incision. They were able to clean it well and staple it back up. He'll need to have labs done every 48 hours for a while so we will probably be here about another week according to the surgeon. Whatever it takes to get my kiddo better and get us home with Kaybri and Joss.

Neon:(noun) meaning Death Trap or Money Pit

I bought this car brand new-4 miles on it. Joss and I decided that we needed to have a dependable car and this Neon came with a 70,000 mile warranty. How's that for piece of mind? Well, its turned out to be a different kind of piece. The temperature gauge went out at 10K. The past 6 months have been filled with the engine light coming on and then going off then on and then off... Then at the first of this month, while I had Brody on life support in the back seat, it blew up in Gunnison. I had to have it towed. After a couple weeks, I got it back. New thermostat, head gasket and a switch for the dome light. On Sunday, I had to get new tires as I noticed wires hanging out of my front ones. As I set out for Primary's last night I felt as though my car was finally ok--newly repaired, new tires. WRONG! I made it as far as Nephi when I quickly discovered my new tires are defective and were bubbling out the side. I was furious! My mom gave me a ride to Salt Lake. And Joss is going for my car this morning to return the tires to Wal-Mart. I think the car is a death trap and I want out!!

Love/Hate Relationship

I hate being here because it means my child isn't well but I love that they are here to help... It was great going home on Saturday. Then on Monday, I pulled back the bandage over his incision to sneak a peek and was sickened to find it oozing. (Oh, and the smell...) Joss and I took him to Gunnison where they quickly agreed that it was infected. We put him in an ambulance bound for Primary's. This morning, our own Salina gem, Dr. Rhet Hallows, came in to let me know that Brody will go into surgery today to "irrigate" the wound. They anticipate doing a good cleaning and stitching it back up. However, if the infection has gotten down to the hardware, it will have to be removed immediately. Then he may have to wait a while before it can be replaced and we start this whole VEPTR placement over again. :(

Friday, November 16, 2007

Woo Hoo!

We are making arrangements to go home tomorrow. Woo Hoo! Its only been 8 days but every day in the hospital feels like 10. Brody is doing pretty well. He'll go home with 1/2 a pharmacy as usual but that's ok. I think he'll finish his recovery much better at home. Its hard to get back to "normal" sitting in a hospital. So, I won't be updating this blog as much since we don't have a computer at home, but I'll be sure to update it often still... At home, Kaybri is doing ok. She is loving Grandma and Grandpa's house but she is getting a little bit homesick. I can't wait to get us all home. Joss has been busy working. The coal mine has been a little slow which in turn makes it slow for the coal haulers. He gets a little frustrated but we are just thankful that he has the opportunity to work. I'm sure things will look up. -- If you ever want to change your outlook on life, spend several weeks away from your family in a stressful and uncertain situation. You quickly realize the things that really matter :)

As I expected

Brody's still very irritable today. He has been on a combination of 6 different pain meds and sedatives. I think they have finally decided on two meds. Just two. Because all the abrupt changes were causing him to get a little twitchy. One doc suggested that maybe this is just the way he'll be now--behaviorally. Like I should just accept the fact that he thrashes around and gets all worked up. I think not, buddy! But I really feel like tomorrow might be the day. I can't wait to get home...then sell my home but that's another story.

Thursday, November 15, 2007

Moody Man

As I expected, Brody is still very irritable. Enough so that I think the docs will not push the idea of releasing him tomorrow. It would be great to get home but the only thing worse than being here for weeks at a time is going home very briefly and having to make an emergency trip back. It feels like failure when that happens. Like maybe we let him down in some way. But anyway--expect us to be here at least through the weekend and lets keep our fingers crossed that we'll be home for Thanksgiving. After all, it looks like pain management is the only thing holding us back. He has now been successfully weaned down to his normal ventilator settings. YEAH!

Leaving so soon?

Brody is doing better today. They keep changing his meds about every 12 hours so its hard for me to know what he's even taking right now. But whatever meds, they seem to be working. The doctors today said that if he continues at this rate, and if I feel comfortable with it, Brody may be released as early as tomorrow. It would be wonderful to go home so soon but he is still quite agitated and I'm not sure I want to compete with his fits. But I guess we'll see how things go. On the home front, I just got off the phone with Kaybri. She didn't have much to say which is unusual. I miss her terribly. I miss Joss too. It is so hard to be here. I just want to go home and be with all of my family. Hopefully I'll get to real soon.

Wednesday, November 14, 2007

Getting better...or not

Through the night Brody's CO2 levels improved a lot. They were able to turn down the rate on his vent from a 28 to 24 (our goal is 14) He finally had a BM. Its funny to get excited over something so gross. And his pain has been fairly well managed. He looks really good today. But as the day progressed his levels went weird again and his pain was again an issue. The doctors decided to restart one of his continuous drips for pain relief. Hopefully it does the trick... Last night we were pleased to have a surprise visit in the PICU from Justin and little Emily (Jenn was visiting down the hall they said). They seem to be doing pretty well since Ian's passing less than 2 weeks ago... On the home front, things have been difficult. Money is tight and stress runs high. We are trying to sell our house and are so far unsuccessful. We are strongly considering moving to the Salt Lake Valley. Its very difficult to have our small family spread all over the place anytime their is a hospital stay (and that's quite frequent). Joss stays at the house and works most of the day. Kaybri spends her time with Greg and Lori and the kids. (THANK HEAVENS FOR THEM!!!) Brody is here at Primary and I'm here most of the time but spend my nights down the road at the Ronald McDonald House--kind of like a hotel. We are just trying to decide what is best for our family. Close to family or close to the hospital? I guess we'll see....

Tuesday, November 13, 2007

Expect Delays

Brody's body is up to its usual antics. High CO2 levels. They are hoping to remedy this by going up on his ventilator settings. Also, unlevel bi-carb thanks to his kidneys. And he hasn't had a BM in 3 days despite a regimen of laxatives and suppositories. Probably due to the large doses of pain killers he's still requiring. Its kind of frustrating to see him in either so much pain that he is thrashing around or to be so heavily medicated that he will lay in the same position for several hours. So medicated that his pupils have no response when you shine a flashlight into them. But for now, I choose comfort over consciousness... On the home front, Joss didn't have to work today so he has thus far spent the day spoiling Kaybri. They went shopping (a die-hard favorite of hers), ate McDonalds, went to the pet store to play with the Kitties and stopped off by the elk ranch--or "elt" if you ask Kaybri. Next stop, to the auction to see Grandpa Joe and the "moo cows" if her energy will sustain. I'm glad to see she is in good spirits through all this.

Monday, November 12, 2007

2nd VEPTR--Ready or Not!

On November 8, Brody returned to Primary to have the VEPTR placed on his left side. The procedure lasted about 2 hours, as normal. Everything went very well and he was placed in the PICU to begin his long recovery. So far, so good! His chest is noticeably bigger. (time for new shirts) No major complications to speak of at this point. (knock on wood) He's had some very minor things mostly because of his nephrotic syndrome making his kidneys a little out of whack. Also because he has some abdominal distention. X-rays show that its just gas causing the sudden swelling of the belly. I'm confident that it is because he has an NG tube for his feeds. I've convinced them to let him try taking liquid orally to help resolve the matter. They have taken away all of his "drips" so he is no longer in a steadily medicated state. He gets pain meds and sedatives through his feeding tube as needed. Today the attending physician said that they are hoping to advance his diet and get him home real soon. I'm not holding my breath. But lets keep our fingers crossed!

Loss of a Friend

During Brody's six week stay during his first VEPTR placement we met a lot of new people in the ICU. None that touched our lives more than the Pearson family whose infant son Ian was bunked next to Brody for 3 weeks eventually receiving a heart transplant. A friendship quickly grew between our families. They were a source of comfort and strength during our struggles. They are the most remarkable family and have taught us so much about ourselves in the short time we have known them. We are terribly saddened to hear of Ian's passing on November 1. We pray that peace may be with the Pearson family during this time of need.

Sunday, November 11, 2007

Brody's first VEPTR placement and life at home afterward

After having the first VEPTER (Vertical Expandable Prosthetic Titanium Rib) placed on August 31, he spent over 6 weeks in the PICU at Primary Children's. There were many set backs in Brody's recovery due to pneumonia and ever worsening kidney disease. We were unsucessful in our attempts to wean him from the venitilator. We eventually opted for a Tracheostomy on Sept 24 so we could take Brody home on life support. Joss and I had to take a lot of trach and vent classes at Primary's before we were finally able to take Brody home on October 8. It was very overwhelming to go home with all that equipment. Our home health was VERY minimal which left 99% of the care on us. Let me just say that sleeping is a thing of the past. And forget about a social life! When Joss and I are the only ones who know how to care for Brody, going out to the movies or to dinner with friends is just not an option....On October 16 it became apparent that Brody was developing some sort of respiratory illness. Our local ambulance crew (who are friends and acqaintances of ours from our community)transported him to Gunnison Valley where Brody was soon put on Life Flight and sent back to Primary's with a respiratory staph infection. I felt as though I had failed him. It had only been a week and we were already back. Luckily we were only there two days and were able to come home Oct 18--Kaybri's Birthday. I felt bad that Kaybri's birthday party had to be cancelled but Joss and I made it a point to bring her to Salt Lake with us so we could take her to lunch and be with her on the 2nd birthday. I think she actually enjoyed her day!...Less than a week later, Brody began throwing up which is very scary with a trach and vent. He was again taken by ambulance to Gunnison Valley. He was admitted and spent two more days. It was beleived that he was still battling the last of the staph infection from the previous week. After getting released, things went much smoother at home. Joss and I really got the hang of it and was able to care for him very well. Its been a lot of work but its been a great character builder for our whole family.

New to the Blog Scene

Blame it on my small town roots. Where there is no need for a blog because everyone knows your business--whether you want them to or not. I will likely be the only one contributing to the postings on this blog where as Joss is not very technologically inclined. He's barely able to navigate his way to Solitair on his own. Computers just aren't his strong suit. He's more of a hands on kind of guy. And because we do not currently have a computer in our home, most of our postings will be done while we are at Primary Children's with Brody.