Friday, September 09, 2005


Yesterday afternoon the cardiologist reviewed Max and we discussed the future plan for his heart surgery. Today they are doing an echocardiogram on Max to ensure there are no changes within the heart (no worsening of the VSD or the faulty valve) and no infection. They are concerned that because they haven't found the source of infection (probably cause of the high fevers), that is could possibly be in the heart. Today's test will help determine if there are any such problems.

Wednesday, September 07, 2005


Unfortunately Max's day did not improve. He spiked yet another fever of 103 and was very much in discomfort. The doctors are quite confused on what is going on and how to treat my lil' guy. Because of the repeat high fever, they had to do another spinal tap today and it took four tries this time. Additionally his IV went bad and they had to start another one in his scalp. So far tests show no infection, which is great...but then confuses the doctors even further.

On a personal note, my foot/ankle continued to get worse throughout the day so we went to the doctor who thought it was broken. So the gang (Eliz and her two kids) and I then went to the hospital for the Xray. On a funny note, Jackson lost it when we started to leave because he wanted to go to yet another hospital! He is starting to learn that hospitals can be fun (when you are not a patient) because of all the toys. He loves to visit Max because of the huge playroom at Children's! Fortunately the initial reading indicates nothing broken but they are having a radiologist review in the morning. Felt like Maxwell getting my Xray...he's had one a day for the past week because of his feeding tube moving...yikes! He is such a trooper.

So tomorrow Eliz and the gang and I are heading to Children's to spend the day with Maxwell. I can't get around very easily by myself so this will make the trip much easier.

Off to make my hourly check in call with Max's nurse...hopefully there is better news this time.


Usually I simply report on Max's medical condition, but today I am having a very rough day as Max's mom and I thought I'd share.

The past few days have been extremely rough and I found myself often questioning...can it get any worse? From the horrific divorce to hospital bedrest, Max's early arrival and genetic disorder, I have been feeling completely overwhelmed and scared out of my mind for the future. Of course there are good days when I feel really strong and capable and have wonderful, positive thoughts for the future. Then there are this week...where it seems like the weight of the world is on my shoulders and I quite simply don't know how I am going to handle all of this.

I am not sharing these thoughts to be "woe is me" but to lead up to last night. So I finally leave the hospital very late after feeling comfortable that Max was settled in for a good night's rest and I could get home for my early morning "therapy" (much needed!) appointment. We snuggled and had lots of good mom and baby was wonderful.

So I arrive home but can't get the key to my house to work so I head back out to my car and trip over the last step. I completely twisted my ankle and just sat there in the driveway crying and crying....unable to move. Then I realize the dogs are out with me but they are nowhere to be found. If you know Barney and Shakespeare, you know how much they love to run! I call Eliz (thank God for cell phones!) and she comes running over and gets me inside and then Jim goes out searching for the dogs...hours later, no dogs. I am shaking with pain but also freaking out because of the dogs being gone. Luckily this morning Jim found them walking together alongside a nearby road as though they were on a leisurely stroll. Thankfully they are both fine.

I have never in all my life broken a bone or sprained anything...ever. So the irony of this happening during all of this is absolutely bizarre. I know a sprained ankle isn't much at all in normal life, but it feels like the breaking point with all that is going on with Maxwell. It just is too much. Elizabeth and I were jointly laughing and crying last night because it was just too comical that this would happen during everything else.

At the same all this was happening, Max spiked a really high fever again last night and cried for five straight hours. The doctors do not understand what is going on and they are worried there is an infection they have yet to find. Finally they gave him morphine to calm him down, because nothing was working and his heart rate was going sky high. They have scheduled yet another spinal tap for today and many other tests to determine the cause of his immense discomfort and fever. Additionally, they had a horrible time getting a new IV started with him, so they finally had to put one in his scalp. Never a pleasant sight for a momma...but it does seem to work with his fragile veins. The "not knowing" of what is wrong with Max is killing me.

So I am stuck in Bellingham for the night nursing my ankle. At first I was determined to simply hop and crawl my way around, but within hours, I was exhausted so Eliz got me a set of crutches that are helping. We are heading to the doctor's soon to get my ankle checked out, because we fear it could be worse than a sprain. Meanwhile, Max is in Seattle not feeling well at all....we have no idea what is wrong with him...and emotionally I am a basket case.

Hopefully there will be a turn of events and I will have good news to report soon.

Tuesday, September 06, 2005


Apparently Max has confused morning and night! He slept all day yesterday, which was wonderful since he needed to catch up on his sleep from being so sick. However, he stayed up all night and therefore Mom didn't sleep a wink either. Yikes! He wasn't sick this time...just being a baby I think.

Today we got another roommate, so we'll see how tonight is. I am HOPING for at least a few hours of shuteye!!!

Gave Max a bath today...a little hard with his IV and oxygen, but he does always enjoy the water. He is now sleeping very comfortably. He also enjoyed his swing for several hours today...hopefully that wore him out for tonight!

Started to head home tonight because I have an early morning appointment in Bellingham, but I missed him within minutes of leaving the hospital. So I turned around and came back. He is addictive! :)

Monday, September 05, 2005


Quite a turn of events from yesterday's happy email...

Yesterday, as I wrote in the blog, was a happy and uneventful day for Max until around 11 p.m. I was very excited that I would be able to go to bed early and really get a good night's sleep. However, Mr. Max had different plans. He started getting fussy and fussier and fussier...and finally he was simply frantic. Nothing would calm him down. He was absolutely 100% miserable. This went on for about 4 or 5 hours, just like last Monday. We thought it was gas, but couldn't give him anything because his tube had migrated and we were waiting on an xray to determine the location. But sure enough, it was his temperature again. Over 102 and his heartrate was over 200. He appeared to be in even greater pain than last week, which I didn't think was possible.

So we are running the same series of tests as last week. However, they also are watching for pneumonia because his oxygen needs increased dramatically over the night. Additionally his heart rate is much lower than usual and the docs can't figure out the cause for that. And lastly for some odd reason, Max has not urinated for much longer than usual. They tried several times with a catheter and now they have "bagged" his wee wee waiting for urine to test for infection. This concerns them because of his heart condition.

As always, your special thoughts and prayers would be greatly appreciated today. He is resting comfortably right now (with the help of some medications) but I am not sure what is in store the rest of day for our wonderful little guy.

And as they say, another ride on the roller coaster.

Sunday, September 04, 2005


Max is feeling a lot better! Woo hoo! Last week was a "doozy," and I am relieved to see him back to himself again. Today he is bright eyed and alert and loved spending time with his grandparents who were in town from WV.

Max is really making progress...and there actually is talk about him coming home before heart surgery. He would require in home nursing care and a lot of medical equipment of course, but still to have him home would be fabulous! The docs are very impressed with his weight gain...he is now 6 pounds, 10 ounces!!! That is great news considering all the work he does to breathe.

Keep up the great work Max, and before you know it, you will be getting lots and lots of doggy kisses from Barney and Shakespeare! :) That will be one terrific day!