Hayden's Hope

Thursday, May 26, 2011

Thank you for all of your prayers and well wishes for Hayden.

Well the Trach went fabulous. It’s so wonderful to see his beautiful face again. Hayden’s vitals were strong during the entire operation. He returned to his room and woke up almost right away. Of course we are in pain management mode, but clearly the morphine is working because he is playing on his computer right now. Today Hayden’s biggest concern is making a get well card for Buster Posey.

The other exciting news is that they did a change on his ventilator. Hayden has been on a ventilator setting called PRVC (Patient Rate Ventilator control) support – where the ventilator can totally support all of Hayden's breaths. In this mode Hayden can also breath over the ventilator. This morning we tried out a new setting called CPAP and he did so well that now when Hayden is awake he will be on this setting. CPAP (Continuous Positive Airway Pressure) support is where Hayden initiates all of his breaths but the ventilator provides the volume of air to go into his lungs. When Hayden goes to sleep, they will change the setting back ot PRVC. This is a HUGE step forward for Hayden and he is very excited about "breathing on his own" so to speak. Its so exciting in fact, that all of the nurses and RT are coming into Hayden's room to congratulate him.

Also the nurses disconnect him from the ventilator for certain procedures and during this time he is sort of breathing on his own a bit where in the past when had to be hand ventilated. I am so proud of that boy!!

Tuesday, May 24, 2011

T minus 14-1/2 hours

Some of you may have already correctly guessed that I am actually really going to nursing school here at UCSF. I am moonlighting as a mother of a really sick child to gleen as much information as I can before taking my boards. I figure why take out a student loan when the insurance company will cover my costs going this route.

There are a lot of pop questions in my studies here. Strangely most have to do with Hayden's FOP, but I do feel that I have suffuciently burned to memory all of the genetics, details, statistics, medical terms etcetra to be able to asnswer any question in that realm.

Today's pop medical question was a good one. I failed. The nurse asked me (as clearly I am all knowing), "Is Hayden's Pick line central, perifferal or in line?" Adopting my most knowing voice I replied, "Well according to the Pick Line Nurse, Hayden's pick line was central but then it got slightly pulled out so i'm not really sure. Does that mean its still central, centered or just left of center? I dont know.". Just for future refence, it is no longer "central", but now a mere "in line". The difference a few fractions of a centimeter make.

I also provide translating services for the nurses. I am now fluent (well almost) in reading Hayden's lips. The most important things to relay are "bed up, bed down, sit in chair, wii off, wii on, movie, tv, suction, pain medicine, more pain medicine and sleepytime medicine."....all very highly medical terms.

I am currently cramming for tomorrow's test which will involve pre-op, hand-holding down to the O.R, post-op and general hovering to confirm vital statistcs.

I hope to finish my studies here in less than three months.

Friday, May 20, 2011

Family Meeting #3

So you may be wondering "What happened to "Family Meeting #2? I never read a post on that one." Well I didn't write about that one because it was too depressing, but I'll tell you about it now. Family meeting #2 was about 3 weeks ago. It was the meeting where the doctors told us that basically Hayden wasn't going to make it and there was nothing more they could do for him. John and I were so very upset....lots of tears were shed. But we both told the attending doctor that how could he tell us this news when Hayden at that very moment was playing Wii in his room. We told him that we just can't believe that what he was telling us was true. It was just so devastating.

I tell you the gods were shining down and the power of prayer was working because from that point on....I just know that (and I'm not that religious) God whispered in Hayden's ear "Show them that they are wrong." ...Hayden's respiratory stats started to improve. And when I told him his birthday was coming up, he got another spark and announced that he wanted to walk! And you all know how the birthday went....FABULOUS!! Hayden showed those doctors that they were wrong and it was so beautiful to watch.

Family Meeting #3 was to talk about what the options are for Hayden now. We were told that Hayden would need to be on a respirator for the rest of his life....another statement John and I sort of knew deep down and it was still hard to hear. But we also still believe that there is a long shot that Hayden could get off the respirator and the doctors confirmed that miracles do happen. The doctors highly recommended Hayden have a tracheostomy. This would enable him to move around more safely. He also could possibly go home. When you say? They say maybe three months, maybe more, maybe less, but that is also a huge guess on tne doctors part. All depends on how well Hayden's lungs continue to heal.

So after the meeting, we told Hayden about the trach. He was sad and scared. We cried together because we are and he is even more so, sick of being on the ventilator, being attached to tubes, frustrated about not being able to speak, eat or drink. Its more than any 11 year old or any child should have to go through,

So many tears, so much frustration. How do I make my boy smile again? The solution walked right into the room. A nurse named Linda was with us that day. She had told us that she had run the Bay to Breakers with her boyfriend and during the course of the run her boyfriend had been running next to a naked man...Linda of course had taken some pictures. I asked her "do you have any pictures of your boyfriend running next to the naked man in the Bay to Breakers?" and she smiled wickedly as she pulled out her iPhone. "Hayden you want to see something that should never happen?" she asked. A small glimmer of a smile started to spread over Hayden's face. Linda showed Hayden the pictures. So funny!! Hayden started laughing. So hard in fact that he started getting tears in his eyes. HA!!! We laughed for a good five minutes at the funny pictures and talked about how people really shouldn't be running naked!.
The trach is scheduled from next Wednesday at 2pm. Remember to say a prayer for Hayden during that time. We hope it will be the next chapter for Hayden towards getting better and getting out of here.

Friday, May 13, 2011

CO2 Monitor and Early Birthday Presents

I have a love hate relationship with the CO2 monitor in Hayden's room. This is the machine I look at right before I go to sleep, in the middle of the night when I wake up and in the morning when I get up - all to see what number is on it. It can change my mood from happy to sad in a heart beat. I've learned that sometimes the number is correct and sometime as the nurses tell me the machine is just used for "trending" either up or down. The way I know when it is correct is when the nurses draw Hayden's blood at 4am to check his CO2 level and we get the most accurate reading for Hayden. I hate the monitor when it is showing anything above 80. I hate it when it randomly flashes any number over 100. I hate the monitor when it is trending upwards and I really feel like throwing the monitor out the window when all night it shows a CO2 of 75 and the blood draw shows a CO2 of 105!

The other thing to note is that doctors and nurses like to call the CO2 reading the "Entitle". They say "Oh, his Entitles look great". Sometimes it sounds like they are saying "His End Titles look great" or "His entrails look great." which I could see as an appropriate comment if we were in surgery. I've asked several nurses and doctors what this word "entitle" has to do with CO2 and no one seems to know....interesting. Entitles, Entrails, End Titles, Titleist...hmm maybe Tiger Wood knows?

Anyway, I digress. There are times when I love the CO2 monitor. I love it when it is trending downward, when it shows any number below 80 and especially tonight when it flashed for the first time a 49! Wow! Can't wait to see what his "blood gas", as they call it, shows for the real CO2. As of this writing it is flashing in the mid 50's - 60.

Hayden's birthday is Sunday and he has started getting some special birthday gifts. You all know what a Giants fan he is and on Wednesday night Bobby from the Marketing Dept at the Giants stopped by with a gift for Hayden. First was a special birthday video of Buster Posey and Pablo Sandoval giving Hayden a pep talk, telling him to get better soon, wishing him happy birthday and they both told him that they would be playing Sunday's game in honor of Hayden. How cool is that? Then Bobby pulled out of a bag a real Giants Jersey signed by Buster Posey. Well that kid was so excited!! He has been using the Jersey as a blanket. Thank you so much Giants!

He also got another birthday gift from Amy Trapp and her daughter. Many of you may not know, but Amy's company Jane Hammond Events caters all of the fabulous food for Hayden's Hope Fundriasers. Anyway, they came by the other night. Amy brought her daughter because she and Hayden went to preschool together. They gave Hayden the cutest stuffy. A replica of Loni the dog, complete with dog collar that says LONI on one side and I Belong To Hayden on the other. So sweet!! So now Loni will always be with Hayden.

Sunday, May 8, 2011

A Happy Mother's Day

I had such a wonderful mother's day! I woke up to my beautiful Elsa Lilli looking at me asking when I was going to get up - love that girl! Nice long run up on Mt. Tam. Wonderful brunch with my sisters and parents. Elsa and I got to the hospital at around 3. When I walked into Hayden's room, he was sitting in a chair holding his iPad which was faced towards me showing the above beautiful Mother's day card he had made. Big smile on his face. So great to see him out of bed again. A little later, we got him up out of the chair and he took the four steps to him bed with a some assistance. It made my heart soar. Lucky mom!!

Friday, May 6, 2011

Happiest Mom Today

I am the happiest mother alive today. Hayden’s prognosis has always been tentative. A child with restrictive lung disease coupled with pneumonia is not a promising mix. But today he gave me the best surprises; early mother’s day gifts if you will.

First when I got here, I learned that his CO2 was the lowest it has been since he arrived on March 6th. It was 79. I also learned that his chloride was back to normal levels. Dr. Kitterman had found chloride in Norway that we could bring in if we need it, but now we don’t and I am so happy. Hayden has lost all of his edema, fluid swelling and is back to a normal weight. The only thing left to fix are his lungs. The darn respirator is still on really high settings. On the respirator the lines show yellow when he initiates a breath and red when the respirator breaths for him. Currently it almost always shows red lines, which is the hardest part to see because he now has so much energy and is almost back to his old self.

The second best thing was when Hayden and I were talking about his birthday and doing some planning for it. I told him that the hospital is going to let us use their special kids technology room to have small family birthday and Hayden announced that he wanted to walk there instead of going in a wheel chair. Wow! How cool is that. I told him that we should start practicing because he has not walked for 2 months. So he decided right then that we wanted to try to stand up and we got him up out of bed with a lot of help from the nurses and he stood up. A little wobbly on his legs and I held him to make sure he didn’t fall. But oh boy, that was really cool. The best was yet to come…..

Hayden decided right after that he wanted to go out to the patio so we got him into the wheel chair and rolled him out there with all of his IV’s and meds and a mobile ventilator in tow. We sat out there for a little while and he got a great visit from his special friend in Kindergarten, Mac Swergold and his mom Dawn. We decided to show Mac where we were going to do Hayden’s birthday. So we rolled Hayden in to the Technology Room with Mac and then we went on to the Playroom to check it out as well. The Playroom was closed, but our friend Loni the dog was hanging out there. It was then that Hayden decided he wanted to try walking so holding on to me, we got him out of the wheel chair and Hayden took two small steps on his own. It was so great to see the determination in his face. I was so proud of him.

The best was the last. Brought him back to the room and after a quick rest on the bed, Hayden announced that he wanted to try to walk again. This time we got him out of bed and he held onto my arms while he walked to the window and looked out. Its about 10ft from the window to the bed. It’s the first time he has been able to look out the window. And after about 5 minutes of checking out the view, he turned around and we walked back to bed. I swear it was just like watching your baby take their first steps. I was so happy I was crying. And when I told Hayden that I was crying because I was so happy and I got the biggest grin from him which made me cry even more. I’m surprised he didn’t roll his eyes at me!

That kid amazes me! Miracles can happen.