Saturday, October 08, 2005


Thank you for the abundance of prayers for Mr. Max! He is feeling so much better than earlier this week...yea!!! :) He still has some pneumonia and the blood and urine tests did detect infection. They are doing additional tests throughout the weekend to confirm those results. Fortunately, his LP did not detect meningitis. They had to do the puncture twice and Max did not enjoy that, but once again my pinky brought some comfort! :) I love being able to help him get through some of these procedures. I kept telling him, Max you have every right to cry! He is one strong little man...unbelievable really! The IV nurse kept saying yesterday how strong he was...she was very surprised and needed help holding his limbs down for the IV! Good sign!

Thanks again to the hundreds of you who are praying so diligently every day for my lil' guy...MUCH appreciated! Keep up the great work! :)

Thursday, October 06, 2005


At 6 am our day started with MANY attempts at a blood draw. Max's veins are "challenging" as the IV techs always say. He was not a happy camper....but he is such a trooper. Sucking on my pinky seemed to help at least a little. They finally decided to give him a break and come back later. That time fortunately was successful. ENT then stopped by...his nose looks ok. They can detect some scarring but they are still very open. We are keeping our fingers crossed on that issue.

There is an LP (lumbar puncture) scheduled for noon today. That is when they stick a needle in the back and drain spinal fluid to test for infection. Not a fun procedure, as you can imagine.

We decided during yesterday's care conference to move forward with the surgery for the G Tube and Nissen. That will be hopefully next week...if he recovers soon from the pneumonia and other issues. Everything is pending of course on his health. He will be in the ICU for some time after the surgery. This is a fairly complicated surgery and will be a good test on Max's strength and his lung reserves. The docs are very curious on how he does after soon is he extabated, how soon does he bounce back, etc. That will help determine if he will need a trach, status of overall health, etc. While I am nervous about such a big surgery, it is worth it because it will help with his feeding immensely.

Wednesday, October 05, 2005


The past two days have been...well, quite honestly, I cannot think of an appropriate word. Perhaps terrifying, nervewracking, numbing...those are a few that come to mind.

Max finally became calm after more sedation yesterday around noon. It had been over 15 hours of horrible agitation. Since then he has been EXTREMELY calm...sleeping for the past 24 hours, which has additionally worried the doctors. He has had multiple blood draws, which show no infection as of yet. But they are definitely worried about this and have more draws scheduled throughout today. According to his chest xrays and other indicators, he definitely does have pneumonia and they say we can expect him to get worse before he gets better. As far as his heart, which has also been an issue this week, he had several EKGs yesterday because his heart rate was very low for him (70s - 90s all day) and his bradychardia was certainly worrisome.

They are going to run some more tests today, including a CT scan and an LP (spinal tap). The scan is worrisome but I am trying to remain optimistic, I really don't think we will find anything wrong there. But what they are questioning is, is there a blood issue in the brain, is there a chance of a stroke...all which are very serious of course, but my gut tells me that is not what it is. They are considering these options because of the sporadic temperature changes (he went from very high to now quite low) and the abnormal heart rate and his overall presence.

I'll be honest, he just doesn't look very all. As we discussed in rounds this morning, it's quite simple...he doesn't look like himself. This is not the usual Maxwell. And that is the biggest indicator that something is wrong.

We have a care conference scheduled for this afternoon. I'll keep you posted...and your assignment is to keeping sending prayers and warm thoughts his way.

Tuesday, October 04, 2005


We are now in Hour 15 of Max's misery. He started crying last night at 8:30 p.m. and hasn't stopped. He has somewhat slowed down this past hour, but still is quite agitated. He has had FOUR doses of Ativin, one of morphine and one of Fentinel (sp?) and has virtually been unresponsive to any of these drugs. Hopefully the latter of the drugs is kicking in as we speak...and I just asked for another dose of Ativin as well. Usually one dose of sedation calms him down quickly. That is what is really odd about what is going on...this is completely different than the usual Mr. Max.

We were very hopeful the sedation would help because his heart and lungs were/are taking a beating with his agitation. His heart rate was in the 220s and 230s for most of the night...and his respiratory was reaching 180. This of course caused quite alarm within the team. Additionally, he had a fever throughout this at 104. This morning they started an IV because he was so dehydrated and they performed a series of tests. So far nothing out of the ordinary.

Our regular medical team brought down docs from the ICU to get involved last night...and they too are stumped. They are making plans right now to transfer him up to the ICU for more intense care...and in case they need to offer heavier sedation.

As you can imagine, this is absolutely killing me. Not sure if there is much worse than hearing your baby cry so's the most helpless feeling. I am taking a five minute break right now because I am about to lose my coffee and am now writing to all of you to ask for warm thoughts and prayers of peace and comfort for my sweet lil' man who is really struggling.

During all of this he is hooked up to a million and one wires because they are doing an EKG (heart monitor) on him for 24 hours, so it is difficult to move him around very much. The only comfort he is finding is sucking on my pinky finger, having his bum patted, and a cool towel on his sweet lil' head. Even with that he is still quite agitated, but it seems to calm him down slightly.

Max really, really, really needs some good thoughts sent his way right now...thank you in advance for sending extra warm wishes today. We need them desperately.

Monday, October 03, 2005


Mr. Max had his echocardiogram earlier today and results will be available hopefully tomorrow morning. Additionally cardiology put an EKG (heart monitor) on him for the next 24 hours...LOTS of wires all over his lil' chest. There is concern over what caused the episodes last night and they are also wanting to determine the status of the VSD and the date of the repair.

On another note, Max was doing so great with his weight gain until this past week. He actually was up to almost 8 1/2 pounds!!! Chunka chunka! However, this past week he actually lost weight and that certainly isn't good. We are hoping it was because of his surgery and being off his "liquid gold" for different periods, but if it continues this week, this is a sign of his breathing and heart condition worsening.

OT visited him today and she was very impressed with his binky sucking. I have really been working on this and he is getting better and better...we are doing everything to prevent the infamous "oral aversion." Hopefully soon he will get the G-Tube and get rid of his oral feeding tube. This will be soooo much more comfortable for him. It actually came out AGAIN this afternoon (this time due to a coughing episode)...and he does NOT like it when the nurse puts it back in.


Last night Max had three episodes of a significant drop in his heartrate. This is something entirely new for him. They did an EKG this morning and will probably repeat again this afternoon. Our doctor is meeting with the cardiologist today to review and discuss any changes in our plan.

We are having another care conference tomorrow to review everything and discuss the needed surgeries/procedures and possibly schedule one or two for later this month. I have a feeling his heart surgery might be sooner than we thought it was going to be...but we'll see.

As far as his nose, it is recovering well from surgery. The ENT docs check him daily to ensure it is not closing and so far so good.

It is always a "coming of age" when a baby officially pulls his feeding tube out by himself. This weekend marked that moment for Mr. Max! His neighbor (a four month old) pulled it out at the same time, so the nurses and I were joking that it was a baby conspiracy! I met with the surgeon on Friday to discuss our plan of action for his feeding now and in coming years. We have a few procedures to do this week to decide what surgery and feeding instrument will be best for Maxwell. There are three different options and two of the three will allow Max to not have to have continuous feeds, which would be nice and give us more freedom when he comes home.

Sunday, October 02, 2005


For inspiration and renewal of my hope and faith, I visit the church chapel several times a week...sometimes a few visits a day. It's a quiet getaway where I can just think about all that is happening and how Max and I are going to get through it.

There is a large book that families can write their prayers in and I always include a few words of praise for God and some prayers for sweet lil' Maxwell. One such day I was writing and thinking of Max and how unfair this all is to him...WHY did he get a "shell" with so many issues? (I differentiate his "shell" from his spirit, which allows me to be frustrated with CHARGE but not with his wonderful being.) I was writing a prayer on the right side of the book, and I happened to glance over at the left and there was a note that caught my attention...and definitely made an impact.

It read: "I love you Jesus. Thank you for all that you have blessed me with. Love, Max."

Wow, just writing those words still grab my heart as it did a few days ago. Most prayers in the book are long and wordy, but not this one. And none had the impact of these precious few words.


I am home tonight to go through my mail, pay bills, etc....all the stuff that gets neglected while I am at the hospital. As always, I received about ten bills (just for this week) for Maxwell. It is always "entertaining" to review his medical bills. At the end of each, it always states how much he has accumulated in total costs in comparison to his lifetime medical "allowance"...and wow, the latest number was slightly shocking. No one has guessed it correctly much do you think his medical bill is thus far? (This doesn't include the month on bed rest at the hospital.)