Thursday, January 05, 2006
I had to answer a million questions to determine where Max is according to the developmental charts. The one he scored the best on was "social/emotional" and his lowest was "communication" due to his significant hearing loss. That is going to be one of our more difficult areas until Max adapts to wearing his hearing aides. And even then, we must determine if they are truly working for him since he has a mixed loss. I am hoping once they fit better and he becomes more used to them, it will make a big difference for him. If not, we would be looking at cochlear impacts in the future....IF he is a candidate.
I am REALLY looking forward to starting our work with the therapist...hopefully Max enjoys it too! We worked with OTs in the hospital but so many of the times Max was not up for it because of his fragility. But now that he is getting stronger and more stable, I think we will really start seeing changes! :)
ANYWAYS! Fortunately, Max did not have to go to the hospital as an in patient. However, we have spent the majority of the past few days at the hospital for tests, lab work, xrays, etc. and today looks like there will be a little more of that. He spiked a fever the other morning and the doctor insisted he head to the hospital, but then soon after, with the help of a lil' Tylenol, he seemed to be feeling much better and all of his vitals were looking better. So I begged and begged for Maxwell just to come home with me and that I would keep a very close eye on him...the doctor relented. For the most part, he has recovered nicely except that he continues to have massive "explosions" (if you know what I mean!) which is concerning with the amount of diuretics he is on. So we will return to the hospital today for another blood work up to ensure his electrolytes are stable. Results from all of his cultures will be available today as well.
So the good news is that we are NOT back at the hospital...YAY! But we are doing a lot to manage this bug and hopefully soon Max will be completely healed! Thanks everyone for your kind emails!
Tuesday, January 03, 2006
Yesterday his heart rate was much higher than usual...even when he was sleeping. At first I thought it was due to his blood draw yesterday but it continued throughout the afternoon and evening. And when the night nurse came on, she was quite concerned as well but we decided to watch it. Sure enough it continued and slightly worsened as the night went on. Additionally his respiratory rate increased and he was running a slight fever. So I spent a good chunk of the middle of the night talking with the various doctors involved and trying to decide what is going on with lil' Max and what the plan of action should be. We are in a bit of a confusing situation right now, since our local pediatrician doesn't know Max very well yet so we have to rely on Children's physicians still. At first the doctor (Children's pulmonologist) thought we should head down to Seattle but then thought we could hold off until the morning and see our local doctor first thing (which is what we are waiting to do right now) and then we will probably end up in the local hospital or down to Children's later today. We are in the beginning of a morphine wean so the doctor thought we might try going back up on that first and then see if there is much of a change. No one was very excited to have him in the E.R. last night with all the germs and the doctors there would have probably been freaked out with all of Max's medical conditions anyway. On a side note, it brought at least a little humor when I paged my local doctor last night and got a return phone call from a nurse who wasn't familiar with Maxwell. She started asking the basic questions...how old, is he relatively healthy, on any meds, etc. Boy did she get an earful when I had to list everything from start to finish. It was such a reminder for me that opps, not all kids have such an assortment of medical issues!
Max does seem to be a little more "normal" this morning...at least he finally woke up. He was VERY lethargic through the night...never waking even once for nearly 12 hours. That at least provides a little encouragement and his HR is slightly lower than yesterday...but still much higher than it is supposed to be.
I will keep you posted...and most importantly, keep sweet Max in your prayers. Your prayers have worked wonders in the past, let's do that again!
Monday, January 02, 2006
And who let this crazy guy in my bed?
No but seriously, how cute are we together? This is my cousin Thomas...he is a wild child! Two seconds after this photo, he was grabbing at my canula. Hey there Tom Tom, get your own oxygen! :)
Oh and this is my very first time wearing pants!!! Mom and I were super excited! With all the doctors "inspecting" me in the hospital, pants were not a very good option...so we are thrilled with my newly expanded wardrobe. Ok, Mom is thrilled...and I really could care less...but it does make her smile a lot which makes me happy!!!
Sunday, January 01, 2006
Mom says she has never been happier to say goodbye to a year before...she says 2006 has to be WONDERFUL. We certainly paid our dues in 2005! From the very messy divorce (yuck!) to my prematurity, multiple surgeries (never again please!) and lengthy stay in the hospital, we had quite a challenging year from start to finish! We are welcoming in 2006 with open arms!
Here are a few highlights of my "ins" and "outs" for the New Year...lots and lots of good changes!
- Home sweet home in Bellingham, WA (Finally...YAY!)
- Cuddling with my mommy
- Meeting more family and friends (AFTER flu season!)
- OUTpatient clinic appointments (during which we can visit our nurses and doctors and they can "ooh and aah" at how adorable I am!)
- Wonderful, effective therapy sessions for my development (OT/PT, hearing, oral/feeding, etc.)
- Playgroups with other kiddos like me!
- Making new friends in our new town!
- Walks around the neighborhood
- Hangin' with my cousins, Thomas & Jackson (stay healthy boys!!!)
- Being surrounded by loving, thoughtful, good people
- Getting to know all the wonderful people who have been praying so much for me!
- Educating people about the importance of quality, accessible, affordable programs for special needs community (Mom & I are very dedicated to this issue...we have heard that navigating the "system" can be quite a nightmare!)
- AND MOST IMPORTANTLY...STAYING HEALTHY & GETTING STRONGER!!!
- Lengthy stays at the hospital
- Being sick and requiring surgeries
- Medicines (we are excited to wean down the list!)
- Saying goodbye to fellow children when their bodies could no longer go on (mom and I have had our hearts broken too many times this year)
- Helicopter and ambulance rides (I prefer the car now please!)
- Moving (I love my doctors and nurses, and I think I will really like Bham...well once I am allowed out of the house!!)
- People who are immoral, selfish or just plain ol' mean (Sorry, absolutely no tolerance for that...especially after everything we have been through. We need to be a more loving, helpful, caring world...don't you think!?!?)
- Lupus (My doggy Barney was recently diagnosed with this, so I am just using wishful thinking that if I put it on my "out" list, he no longer will have this condition!)
- AND MOST IMPORTANTLY, SUCTIONING! I do not like when my mom has to suction my nose. Hopefully soon I can do a better job of clearing my own "secretions"...because I truly despise that machine! (For those kiddos out there who have spent time in the hospital...you know what I mean!)
Love to all of you! I must run...Mom says it is time to put away the laptop and get to bed...so night night everyone. Please remember to keep my friends (Ryan, Lane, and Carter) in the hospital in your prayers....they each are having a rough time and need some extra love and support. Thank you! Happy New Year!!!
Love, MIGHTY MAX
Some days his respiratory rate and oxygen sats have been great, other days not so great. Today his O2 requirements were triple what they usually are and he still was not maintaining a great saturation. He did this one of the first nights he went home and the nurse almost thought he should go to the hospital, but then he didn't do it again. And then today every time he fell asleep, his sats would not stay up for anything. I tried every position I could...finally I would just wake him up. They wouldn't drop very low, but the problem was to keep them at a decent level, his O2 was high. Frustrating, scary, confusing...
Tomorrow we go to the hospital (in town) for his weekly blood draw and then the following day we have our weekly doctor's appointment. I am also going to put another call into our pulmonologist at Children's to get his thoughts. Hopefully this issue will self resolve again within a day or so....but it could be a sign that something is happening with his lungs. There was an obvious change in the sound tonight.
Other than that, Max has adjusted quite well to being at home. He is quite calm and happy and we are trying our best to get a routine. It is VERY difficult "logistically" to keep it all together. There are a million medicines to keep organized and on a perfect schedule...pumping, making (gets extra calories) and organizing his milk (and then washing pumps and bottles about 10 ten times a day...yikes!), giving his various ointments, checking his respiratory rate, rotating oxygen tanks, refilling prescriptions, reordering equipment, changing his tape/cannula/oximeter on a regular schedule...BUSY, BUSY, BUSY! And then of course there are just the usual "baby" duties...and the therapy to keep up his developmental progress. But each and every minute and stress is worth it to have him home. He is absolutely incredible! And I think he is truly going to thrive being at home...it just requires 24/7 care, love and dedication!!! :)
Please keep sweet Max in your prayers for a continued smooth transition to being at home...and most importantly improvement with his lungs, breathing, and O2 saturations. Thank you everyone for your love and support...greatly appreciated!!!