Friday, October 28, 2005


Currently Maxwell is still intubated and will remain so for several more days. He is having strange episodes of low oxygen saturations and high blood pressure that are concerning. Until these are resolved, he will not be extabated. He is fairly heavily sedated because of being intubated...but at least he is comfortable. However, it is breaking my heart that I cannot hold him right now. It has been three days since I have held him and it feels like a lifetime.

The urine test came back positive for infection so they are retesting that again this evening to confirm those results. Antibiotics will be changed accordingly. He is also getting a blood transfusion in the next hour. He lost a lot of blood the other day when they were starting an IV and they are thinking that his low O2 sats are partly due to that.

We had our Care Conference today focusing primarily on the upcoming heart surgery. Despite cardiology's initial wish for us to wait until he is bigger and stronger, the team has decided to move forward because of some changes in his lung and heart status. We are HOPING the surgery improves his breathing and better regulates his body. However, the cardiologist continues to warn that we might not see dramatic changes afterwards. We simply don't know at this point what the outcome will be.

Eliz and I had a lengthy discussion with the cardiologist earlier today about the risks associated with surgery, especially on such a small baby. Quite frightening. No mother wants their baby to have open heart surgery, but we have to trust in our team and the surgeons. I agree that something is going on differently with Maxwell and I am hoping that this eliminates at least some of the issues.

The surgery will happen within the next two weeks. I think it will happen the later part of this upcoming week or the beginning of the next. They first want to ensure he is "stable" and that we have not missed anything, i.e. infection. Once he is stable, they will coordinate a day with the surgeons. The surgery will take approximately five hours.

Tomorrow I will be attending the funeral for sweet 6 year old Timmy, who departed his earthly body Monday evening, after a vicious battle with cancer. I took Elizabeth to meet him and his family on Wednesday and we came upon an empty room. It was a devestating afternoon. Please keep lil' Timmy and his loving family in your thoughts and prayers this weekend.

I have seen so much sadness and loss in recent months, I know I will never be the same again. Yet while it can be extremely depressing, it also allows you a clear, fresh view of life and puts everything in true perspective. I know Max...and all the wonderful, inspiring children and families here at the hospital...have changed me for the better. I had the strangest thought tonight as I was putting away my breast milk. In some odd way, I feel like my life has been training me for be Max's mom, his advocate, his strength. Even though there are days when I feel like I just cannot do this, I look at Maxwell and am amazed at his spirit and just know I was destined to be his mommy. He is absolutely incredible.

Please keep my lil' man in your thoughts and prayers...he has a tough couple weeks and months ahead. Thank you everyone!

***And a special thanks to those of you who have sent such fun gifts and cards to Maxwell. Sorry I have been late on my thank you notes, hope you understand! Once Max is no longer "snowed" on sedatives, I'm sure he will love all his new toys and clothes...thank you, thank you, thank you!!! :)

Wednesday, October 26, 2005


Max's fever has subsided thankfully. It started to slowly drop through the night but then spiked again. He has been heavily sedated which seems to be helping his respiratory rate and comfort level. However, his blood pressure is very erratic which is confusing everyone.

The initial test was negative for respiratory infection (which is a huge relief) and we are still waiting on results from the others because it takes 24 - 48 hours for the cultures to grow.

They attemped to slightly wean him off the ventilator this morning, however, he immediately dropped his oxygen to very low levels. It was a very scary moment. The doctors are stumped and are debating whether it is his heart causing these episodes. We just met with the pulmonologist, who I trust very much, and he is inclined to encourage cardiology to quickly move forward the heart surgery. Nobody wants to do the surgery at this point because of his size and weakness, however they believe he will continue these episodes until something is fixed. After the heart surgery, we will decide about the tracheostomy. The pulmonologist thinks that is likely what Max will need. Cardiology is coming by today and we are having a care conference on Friday to discuss the plan.

Right now the plan is to stabilize Maxwell. They are HOPING they can wean him off the vent within the day. It is completely heartwreching to see Max like feels like we are back three months ago. He has IVs coming out of nearly every part of his body, he is completed "snowed" on sedation and he has massive bruises on all over his beautiful body due to all the failed IV attempts.

Fortunately, my sister Elizabeth (and lil' Tom Tom) was able to run down here last night and be with me through all of this. She and her husband have done a wonderful job supporting me during this very lonely journey, and I am eternally grateful. It's crazy to have all of this pressure and responsibility on my shoulders alone. While I think I have a very good sense of all that is going on, it is very, very helpful to have someone else be involved in the discussions and be here to support me and Max.

Thank you too for all of you who have sent loving, encouraging emails and calls...very appreciated. The next few days the doctors and I must make some very important decisions and your prayers are much needed.

Tuesday, October 25, 2005


Max is very, very sick. Within an hour of being transferred to the ICU, his fever continued to rise and he was very lethargic even during procedures.

His fever has reached 106, which is frightenly high for anyone and particularly such a weak little baby. There was an emergency intubation (insertion of breathing tube) to help him breathe and hopefully bring down his temperature. As I write this, they are putting in yet another line to his chest area for a specific heart drug. I had to step out of the room basically because there are that many nurses and doctors in there. We are in "isolation" until more of his tests come back.

I am sorry I am not able to call more of the family members individually, but I simply don't have the energy. I will do my best to give you an update soon. If you must know sooner, you can reach us in the PICU.


Yep, Max is heading back to the ICU....again. The past 24 hours he has been major fussy and his oxygen requirements have increased. Then today he stayed worked up for hours...and sure enough he started have tachycardia (high heart rate), extremely high respiratory rate and quite a fever. So immediately our room became filled with numerous doctors, machines...the works. He got another chest xray and another EKG...results are pending. Right now the IV nurses are trying to get a new IV in him. I stayed at bedside for the first three attempts but I had to step out a few minutes and catch a breath. He actually was handling it pretty well, but it is very tough for a mom to watch her lil' guy get a needle stuck in his head time and time again. Today has been exhausting (and we were up pretty much all night)...and once again pretty scary.

The ICU doctors and I just met and he will head up there within the hour. They need to bump another kid to make room for Max. Hopefully he will calm down and he will return to the floor within a day or two. Keeping my hope that this is just Max getting worked up. They were referring to Max as having "thin ice disease." Basically since his body is pretty weak he is on "thin ice" and if anything little goes wrong with Max, it becomes major because he has no reserves. Let's hope nothing serious is brewing...

Max needs prayers for comfort and peace...and prayers for the doctors that they can decide on a good solution to heal Max's heart and lungs. We need his breathing to SLOW DOWN and his body to grow in length and weight!!!

Additionally, please keep some of our new friends in your prayers: Jacob (28 week old preemie desperately needing a liver transplant but is not eligible b/c he is on a vented trach), Madison (diagnosed with a genetic disorder similar to CHARGE and undergoing a heart surgery as we speak), Timmy (terminal cancer and we need a miracle...quickly), Ben (another preemie with CHARGE who I met online), and sweet little Ryan, the nephew of one of my best friends (a month old baby suffering from major heart complications). Lots of wonderful little boys and girls who all deserve lots of happiness, joy, comfort and peace...thank you for keeping them all (Maxwell especially!!!) in your thoughts and prayers.

Monday, October 24, 2005


So the new pulmonologist (the attending rotates every week) is quite concerned about Mr. Max. He thinks he has been slipping the past few days. His bicarb level was up and so was his respiratory rate...often in the 100s and 120s... over the weekend. He also was concerned with his slow weight gain, however, I reminded him that he just recently started full feeds again. He chuckled a bit at me...I am always defending Max! But I do want them to see the full picture and sometimes little (but important) details are missed. In our nightly weigh-in, Max gained 20 grams today (which is perfect) so of course I jumped out of our room to tell the doc, "hey hey guess what, Max gained 20 grams"...told you so, told you so. :) I think they get a big kick out of least I keep them entertained.

All of this is certainly concerning but I'm not sure I agree that he is "worsening", but we will see. I did notice that he is breathing faster, but I'm hoping that is just a "blip." (Tonight when I was undressing him for his weigh-in, his chest retractions were a harsh reminder of how sick he is...just breaks my heart.)

The doctor is hoping I am right about Max not slipping, and that we will prove him wrong. Let's hope so.

Today they ordered new blood tests (which Max is getting TOO used to, he didn't even cry today, not even a whimper)...and another echo for his heart and another xray of his chest. For the chest xray, he had to go upstairs and I got to carry him all the way there. So while it is not good news that he had to get another xray, I did enjoy the journey. It was so exciting! First time to carry him around the hospital! (Of course a nurse was with me carrying his oxygen tank, but still...this was a big deal for Max to be out of his crib and away from his monitors.) And he was amazing even while we put him in all the awkward positions for the xray. He just looked at me calmly, probably thinking..."mom, what are they doing to me this time???"

The doctor came in a few minutes ago to talk with me and said the xray didn't look great...he thinks something is going on. It could be the heart, but he has not seen the results back from the echo yet. Wednesday's care conference should be full of disagreement between the two specialties, I'm sure. I'm not sure what my opinion is on the timing of the heart surgery.

He has been fairly fussy on and off today, and I finally just got him to sleep so I am going to head back downstairs to make sure he stays asleep. He needs to chill out and let his body heal! I keep telling him that, but already Max is proving to be a "McKinley" and doesn't take well to orders! :)

Sunday, October 23, 2005


Yesterday was Max's 4 month birthday!!! He is getting to be such a big boy! I started a scrapbook of him yesterday (with the help of my talented sister!) and it is amazing to look through the photos of him from the beginning. As the old saying goes, "you've come a long way baby." He was so incredibly tiny, fragile and's heartbreaking, but yet encouraging to know how much he has progressed already.

Hopefully the next month brings renewed hope and promising news!