Wednesday, August 31, 2005


Today Max and I are officially in "ISOLATION" so everyone has to wear gowns and masks in our room. Pretty strange feeling...reminds me of the movie E.T., which atleast brings a smile to my face. :)

They think he has a respiratory infection...actually I (with my medical degree and all - ha ha!) somewhat diagnosed him first and sure enough they agreed once I brought it to their attention. While nurses and doctors are wonderful, I am quickly learning that you really have to be an aggressive advocate because symptoms are overlooked and mistakes are made. It's quite frustrating at times, but I must remember that no one is perfect and medicine is not an exact science.

This week we have had major issues with keeping his nasal stents clear and he's struggling to breathe...and yesterday it seemed to get worse. Additionally he has thrown up several times, which then throws his "OD tube" (his feeding tube that goes to his intestines) out of whack and we have to get an Xray to make sure the tube is in the right place. Yikes! Never thought I would be so excited for him to have the g tube surgery (where they insert a device to allow us to feed him directly to his little tummy through a "belly plug") but I am now pushing the doctors to make it happen sooner than later. Unfortunately he still is too small. They are estimating (they know I LOVE my "estimates") that could happen in a month or so. Until then, we struggle daily to keep the tube in the right place. If it moves to his stomach, his reflux causes him to throw up and then it could possibly get into his little lungs. Sounds frustrating, doesn't it?

Illness is hard enough on a "normal" child at home, but it really hits you hard in the hospital when you have so many other more serious issues. And this complicates his already labored breathing due to his "chronic lung disease" and "congestive heart failure." Boy, do I hate those definitions. I always grimace when the doctors refer to those and say "can we not just say lung and heart issues?" Oh well! I'm getting a thicker skin but you never want to hear those conditions associated with your tiny baby!

We will get more information as the day progresses. Thanks everyone for your kind emails and calls the past few days...greatly appreciated. I tell Max all the time about all his friends and family who are praying for him every day. He can't wait to meet everyone someday!

Monday, August 29, 2005


Today was a yucky, yucky day. Max cried for five hours straight today...and that is VERY unlike him. He is typically a very mild mannered baby (except when he is gassy!). So after nearly every nurse in the unit tried to help me comfort him (including a volunteer who played the guitar and sang for Max - the volunteers here are amazing!), we realized it was something more. He had a temp of 102 and his heart rate was over 200 continously.

So they did a spinal tap (for meningitis), a catheter up his little wee wee and blood tests to determine what was causing the fever. We are still not sure. Fortunately the tests so far show nothing "growing" but we are just in the wait and see period. The doctors said we should have a good idea tomorrow if anything is seriously wrong. Fortunately Max seems much more comfortable than earlier and appears to be ready for a good night's sleep. It was excruciatingly painful to see him in such discomfort and absolutely nothing made him feel better.

I was determined to not leave his side for all the tests...if he could endure the tests so could I. (But yikes, quite a long needle going in his back...and then again up his wee was a little intense!) It took three different people to eventually get the catheter up his small wee wee and three different tries with his veins (pretty fragile) for the IV. It was two solid hours of tests and procedures, yet Max was amazing...he is absolutely one incredible lil' guy!

I'll keep you posted...I am ready for bed big time. We were up VERY early and it's been a long day of rocking, shushing, and stressing out! HOPEFULLY we are going to have an uneventful day tomorrow...hopefully.


Maxwell Bennett McKinley was baptized on Sunday at Children's Hospital. What a magical moment! Celebrating the momentous event were Elizabeth and Jim (Max's godparents), Jackson and Thomas (Max's cousins), and three of Max's favorite nurses. It was an incredibly special day, and Max looked gorgeous in his beautiful white baptism gown. He was on the slightly fussy side (looking back, I think he was starting not to feel well), and we said it's because he thought he was wearing a dress and was embarrased! We did find ourselves telling him how pretty he looked!

We were able to hold the baptism in the church chapel, which is down the hall from Max's room. Typically it would take two minutes to get there, however, we had quite an entourage of staff helping me with the oxygen tank, monitor, etc. so it was a much longer trip and we garnered much attention! It was certainly worth it, but it was also frustrating. I cannot wait for the day to be able to walk around with Max by myself, and not with a whole team! Oh what independence! :)

We would love to have had more family and friends with us for Max's baptism, but I hope everyone understands that I felt it was important to have him baptized now. The chaplain is a wonderful woman and I feel a strong connection to her. She comes every day and says a special prayer for Max, which is incredibly comforting and inspiring for me. Perhaps in the future we will hold a more formal baptism and everyone will be invited.

I will post photos later this week of beautiful Max on his big day!