Friday, December 02, 2005


Ok, I am told by my doctors not to get TOO excited, but I can't help it! I AM JUMPING FOR JOY!!! (The staff got quite a kick out of me yesterday during rounds, because I simply could not contain my excitement!!!) And actually I just had to leave his room because he was sleeping so peacefully and I just wanted to pick him and smother him with love and kisses! So I thought I would use this time to post the good news and let him get his much needed beauty rest. :)

Max is doing AMAZING!!! He is looking better than ever...truly a miracle!!! AND...drum roll please...he might, just might, be home in time for Christmas!!! YES!!! You read right...possibly home for Christmas. It will be tight, but it might just happen! CAN YOU BELIEVE IT? My baby is coming home soon! Holy moly!!!! Can you sense our excitement???

Everything isn't perfect by any means...but he has made tremendous progress. Most importantly, he is officially off of CPAP. That happened yesterday at noon and so far so good. There are a "few kinks" with his lungs that we still have to work out and if they get worse then we might be here for several more months, but I just don't think that will happen. Mommy's intuition is that Max is on the road to recovery and on the road to Bellingham sooner than later!!! YAY!

I don't want to dismiss the few kinks, because they could be somewhat serious. First, a portion of his right lung has collapsed because of his shallow breathing. They did another xray this morning to determine if that is stable or worsening. We should know shortly. Additionally he continues to breathe fast but that has slightly improved so we are pleased with the gradual progress. However, we have to make sure it doesn't worsen as he is off of support for longer periods of time. His oxygen needs have increased slightly, so we are not sure about that. However, he will need that for quite some time due to the pulmonary hypertension issue.

Another issue is that he continues to retain a high level of fluids...despite the diuretics. This will continue to be an issue, but it does present some problems. We are watching this very closely because most importantly, it impacts his breathing.

Lastly, we must determine that he can grow without the ventilator. THIS IS THE BIGGEE. However, they don't believe they need to keep him in the hospital to watch this. He could come home and if he doesn't grow adequately, then we will return to the hospital for breathing support (tracheostomy). This would allow his lungs to not work as hard.

And of course he needs to continue keeping his O2 up and his CO2 down...which he is doing well with now.

My pulmonologist warned me yesterday though again...Max is a THIN ICE kid and if the ice starts to crack, you will have little time before you fall in and drown. Pretty scary to think about. So he and the other docs have reminded me time and time again, you will need to be on Maxwell 24/7 oobserving and detailing every tiny little change to ensure all is well. What a full time job...lots of reward but LOTS of responsibility with absolutely no breaks. But I will do whatever is necessary for Max to come home and start living a "normal" life (well between weekly doctors visits, clinics, daily therapy appointments, the works!) :)

So that is the amazingly wonderful news. We still have many "kinks" to work out...but I am feeling sooooo confident about Maxwell right now. I had this same positive feeling before heart surgery and I was right, so hopefully my intuition is right on!

This weekend we will probably graduate from the ICU and head back to the floor (YIPPEE!!!) and then we will see how he does in the upcoming weeks. HOW EXCITING IS THIS??????????? :)

Wednesday, November 30, 2005


After MUCH begging, the doctors finally gave in to my requests and we gave Max a trial off of CPAP for a few hours. AND sure enough, he proved me right...he did well! I held him and it was so wonderful to not have any barriers (well besides the million wires, IVs, oxygen, etc.!!!) and be able to just smother him with love. Such a joyous time! Then when the trial was over (we just wanted to test him briefly), he had to have the CPAP mask and hat on again...and he was not happy at all. (I'll try and post some photos soon...quite comical get up!) Since he appears more agitated with CPAP, they are hoping to get him off sooner than later. Soooo...there will another trial in the middle of the night and if he does ok and if his lung xray looks the same, they are going to take off CPAP. Max will be MUCH happier! I am sooooooooooooooooooooooooooooooo excited!!!! :)

On another issue, Max had an echocardiogram done on his heart today to determine the success of the surgery. All is well...all the patches and dilations are working as they should. However, the echo did show that his pulmonary hypertension (due to his heart condition and chronic lung disease) is definitely still an issue and he will require supplementary oxygen for quite some time. We already knew that anyway, so not much of a surprise. As far as the bradycardia episodes a few days ago, the EKG showed some irregularity in rhythm but no particular reason why. It hasn't happened since those two days, so hopefully it was simply a side effect of one of the medications.

I am also VERY excited for tomorrow for another reason...the audiologist is coming by to work with me and Max on his hearing aides! I have been bothering the heck out of that department and the ear molds are finally in and we are officially getting started. I am thrilled and just hoping this makes a difference for Mr. Max! Hopefully he doesn't think, "Yikes, Mom sure talks a lot...'Yea yea you love me, you adore me, I'm so handsome...yea yea.' Maybe I don't want hearing aides after all!!!" He better not! Anyway, it should be a crazy and hopefully very successful day!


Yesterday Max was FINALLY extabated! YAY MAXWELL! :)

It was tough at first and they thought they were going to have to reintubate him and then probably schedule the tracheostomy if he failed again in a few days. However they tried a few measures (different drugs and breathing treatments) and then put him on CPAP (a mask over his nose which provides positive pressure)...and within hours, he started improving! His airway has some swelling and possible narrowing probably due to being intubated for six weeks...but we will know more in the next day or so.

He isn't doing "great" but he is doing good...which is definitely progress. We did a blood gas yesterday after a few hours and it was good. I literally was crying and jumping for joy at the same doctors were laughing at me but they were pretty excited too! It was so amazing to finally see his face is truly like a rebirth, it is soooo amazing. I wish I could adequately describe my joy!!!! He is incredibly gorgeous and even more so than six weeks ago. He found his tongue again last night and had great fun licking his lips....very cute. He looks even more comfortable today, which is very reassuring.

The doctors have reminded me though that while he might not need a trach at this point, it will be discussed time and time again in the next few years because of his chronic lung disease and airway issues. Any time Max gets sick or if he is unable to get weight because of his work of breathing, we may turn to a trach. But that's then...and this is now. So I am focused on today and TODAY Max looks great! (Well great for being in the ICU!)

Max has had a million and one visitors today...all of his adoring nurses and doctors wanting to see this gorgeous lil' boy without his breathing tube. Everyone is soooo excited to see his sweet mouth again! So nice he has such a big fan club in the hospital! Fun to have people share in our progress!

The last 24 hours have been very critical in knowing how well he could do being it's a wait and see game if he can keep his CO2 stable and his weight increasing. C'mon Max, keep up the great work!!! You are one miraculous lil' man!!!

Please keep praying for Max's improvement and progress (specifically easy and effective breathing) and also keep our friend Carter in your prayers. He is a 6 month old in the IICU here and he took a turn for the worse last night, and we are hoping he can fight off the infections and resume stability soon. His parents and I have been become close through the month and they are very worried about their lil' angel. Thank you everyone!

Tuesday, November 29, 2005


I was going to post late last night because there was a decision to extabate early this morning...but I was too tired so I thought I would just this morning. And sure enough, the situation changed YET AGAIN over night.

His extabation has been postponed for several reasons. One, he continues to be fluid positive for many days now, despite his powerful diuretics. Two, he experienced many bradycardic episodes throughout the night. Today Max will have an EKG to see if they can determine any issues. This is a first for over a month, and there is a lot of confusion on why it is happening this time. Three, there appears to be an issue with his upper airway due to the absence of a leak around his breathing tube. The airway may be slightly collapsing or perhaps swollen due to his activity and the tube moving around. They put him on a steroid yesterday and we are hoping it makes a difference today. There was talk of just doing the extabation regardless...just to give him a try, but then the heart irregularity started. Hmm...

Additionally I consulted with the ENT yesterday to discuss numerous plans for Maxwell's ears...we will know more in weeks and months to come. From possible surgeries to tubes to mechnical devices, there is much to do yet for Max.

Hopefully I have better news on the lungs and heart later to share later today.

Monday, November 28, 2005


The bottom line is that Max is still intubated. He has recovered wonderfully from his heart surgery, however his preemie lungs continue to be a problem. We have tried a million different things this past weekend but he continues to breathe very fast. I met with the pulmonology team this morning and of course interrogated them...that whole team just gets a kick out of how many questions and ideas I have! I absolutely love those doctors and they are so willing to accept my active involvement and thoughts, which is wonderful!

Today Max will officially leave the Cardiac ICU since he is doing so great in his cardiac recovery and will be transferred to the medical team of PICU. We are making progress...

It is possible we will try extabation today or tomorrow and just see what Maxwell does! If all goes OK (as far as no emergency reinbutation), we will then just watch and monitor his rate and growth and then determine if a trach would help.