What a week...it has been truly crazy, discouraging, emotional...the works. I am hoping peaceful days are coming our way. To keep you in the loop, here are a few updates on my favorite lil' man Maxwell:
NOSE: Yesterday he had the procedure done on his nose...we will know in the next few days if that was successful.
EARS: Max will have a BAER (hearing test) performed today. A few weeks ago I received some pretty discouraging news...Max's hearing in one ear had progressed from moderate to severe loss. I was absolutely heartbroken for both of us. Truly heartbroken...I really thought we had lucked out in this department. However we have been dealing with so many other medical issues that I have tried to not think about it. And basically the doctors don't have a clear answer...there are a few possibilities.
So they are redoing the test today. One ear wasn't tested last time because Max woke up...the test only works if the baby is quiet and sleeping. I am HOPING that perhaps 1) the test was wrong last time, 2) the other ear is still only mild/moderate loss or 3) the "bad" ear hasn't gotten any worse than last time.
INFECTION: As far as Max's possible infection, everything so far has come back negative fortunately. What a relief. He is fairly stable right now. However, they are not going to extabate him because they want to keep him stable for the heart surgery. It has now been three weeks since I have held Maxwell...which is unbelieveably sad and disappointing. Hopefully when I am feeling better, he is still stable and we can once again snuggle. I am tearing up right now as I write this...can any of you moms imagine not holding your precious baby for that long? It's so hard to describe the emotions...I just want so much to make him all better.
HEART: The surgery has been rescheduled for next week and I am hoping, hoping, hoping that nothing postpones it again.
SICK MOMMY: As far as me, I came home last night to try and kick this illness. Losing my voice is quite frustrating when you are trying to talk with the doctors about such intense issues! I went to the doctor and got some medicine, so hopefully that will help. Fortunately both of my mothers are here to help...Suzanne Mom is here in Bellingham helping with Eliz's family (they are opening up yet another business this weekend!) and Mary Mom is in Seattle giving lots of TLC to Maxwell. For those in WV, you will appreciate that Mary had on the Mountaineers yesterday in Max's room...so he has been properly introduced to the blue and gold. And last week Max's nurse also had on football and taught him how to grunt! So even though he may not have a father figure around, he is already learning all about football!
Thursday, November 10, 2005
Tuesday, November 08, 2005
ANOTHER SURGERY
Yesterday I ran into one of the ENT doctors and asked if he could swing by and look at Max's nose...just to make certain that everything was still open and clear. It had been on my mind this weekend. Sure enough they came and took a look this morning and one nasal passage has narrowed/partially closed. I about lost it in rounds...cried, vented...the works. WHY is Max not getting a break? WHY did I have to be the one to remind ENT to look at Max? WHY, WHY, WHY???
So this afternoon ENT will perform a dilation (Max will be heavily sedated of course) at the bedside...this is not a fun procedure but better than having to go to the OR. However, the two times in the past that they have tried this, Max still had to go to the OR the next day...so I am expecting Max will have surgery on his nose again tomorrow.
The heart surgery will not happen until next week...they want to ensure there is absolutely no infection in Maxwell. We were hoping we could extabate him today or tomorrow, however now that will be delayed depending on his nose issue.
I met with the ICU attending today and made my concerns heard (me finding the eye gunk, me reminding ENT to come, me noticing his weight was doing odd things, etc.) He is such a wonderful doctor with a terrific bedside manner...and he is now going to serve as the "coordinator" of Max's care (they typically rotate every two weeks, but he will now check up on things even when he is not "on" as attending) to ensure there is consistency and routine involvement with all of the different specialties. The medical team here is truly incredible...I just want them to be PERFECT when it comes to Maxwell.
Today has been an extremely disappointing and emotional day...I am so sad and so frustrated. Thank you everyone for your thoughtful emails and calls. Very appreciated.
So this afternoon ENT will perform a dilation (Max will be heavily sedated of course) at the bedside...this is not a fun procedure but better than having to go to the OR. However, the two times in the past that they have tried this, Max still had to go to the OR the next day...so I am expecting Max will have surgery on his nose again tomorrow.
The heart surgery will not happen until next week...they want to ensure there is absolutely no infection in Maxwell. We were hoping we could extabate him today or tomorrow, however now that will be delayed depending on his nose issue.
I met with the ICU attending today and made my concerns heard (me finding the eye gunk, me reminding ENT to come, me noticing his weight was doing odd things, etc.) He is such a wonderful doctor with a terrific bedside manner...and he is now going to serve as the "coordinator" of Max's care (they typically rotate every two weeks, but he will now check up on things even when he is not "on" as attending) to ensure there is consistency and routine involvement with all of the different specialties. The medical team here is truly incredible...I just want them to be PERFECT when it comes to Maxwell.
Today has been an extremely disappointing and emotional day...I am so sad and so frustrated. Thank you everyone for your thoughtful emails and calls. Very appreciated.
SURGERY CANCELLED
Surgery has definitely been cancelled for tomorrow. In addition to the eye issue, an increase in his white blood cell count was discovered.
It will be rescheduled when we learn more about his possible infection. Thus far the studies have come back negative. However, as they remind me a million times "this does not rule out infection...we only test for certain viruses...we must wait and see how he does." So we'll see...as you can imagine, I am quite disappointed and frustrated but very relieved that we caught this if indeed there is an infection.
*A special thanks to all the Treasury of Memories staff and customers for the wonderful, loving red hearts...such sweet messages! Eliz decorated the room as a surprise when I stepped out...looks so great! (It was particularly funny because we were in isolation this afternoon so Eliz was decorating in a gown and mask...part doctor/part decorator!) Max definitely has the best decorated room in the ICU. Thanks again.
It will be rescheduled when we learn more about his possible infection. Thus far the studies have come back negative. However, as they remind me a million times "this does not rule out infection...we only test for certain viruses...we must wait and see how he does." So we'll see...as you can imagine, I am quite disappointed and frustrated but very relieved that we caught this if indeed there is an infection.
*A special thanks to all the Treasury of Memories staff and customers for the wonderful, loving red hearts...such sweet messages! Eliz decorated the room as a surprise when I stepped out...looks so great! (It was particularly funny because we were in isolation this afternoon so Eliz was decorating in a gown and mask...part doctor/part decorator!) Max definitely has the best decorated room in the ICU. Thanks again.
Monday, November 07, 2005
POSSIBLY DELAY
So earlier today I am in with Max and I notice a little "yellowish gunk" in his eyes. I mention it to the nurse and she thought it was probably nothing. However, I have memorized every nook and cranny of dear Maxwell and can tell when something is "different," so I asked that we have the doctor look at it. (I felt kind of paranoid for asking, but thought what the heck...I already have a reputation around here for asking lots and lots of questions...might as well live up to it today!) The resident then brought the ICU Fellow, who then brought in the cardiac surgeon...and sure enough, it is of concern. Darnit! I was sooo hoping that I was wrong!
They are sending a "sample" to be tested and results will be in around midnight tonight. The concern is that it may be the beginning of an infection...and they definitely do not want him to undergo such an intense surgery with any type of virus. Even with the test, they won't know for certain that all is well because it takes time for the virus to grow...so most likely it will be a judgement call for the surgeon. He promised me they would make "the best decision." If we delay, it will probably have to be next week because they want to give Max a few days and make sure there isn't indeed any infection.
To put it mildly, the stress level is fairly high right now..."will we? won't we? will we? won't we?" And quite honestly, I am a little frustrated that I am the only one who noticed this. What would have happened if I had just kept my mouth shut or simply not noticed? Oh well...I guess that is why a parent's involvement is so important! We know our children best!
I'll keep you posted.
They are sending a "sample" to be tested and results will be in around midnight tonight. The concern is that it may be the beginning of an infection...and they definitely do not want him to undergo such an intense surgery with any type of virus. Even with the test, they won't know for certain that all is well because it takes time for the virus to grow...so most likely it will be a judgement call for the surgeon. He promised me they would make "the best decision." If we delay, it will probably have to be next week because they want to give Max a few days and make sure there isn't indeed any infection.
To put it mildly, the stress level is fairly high right now..."will we? won't we? will we? won't we?" And quite honestly, I am a little frustrated that I am the only one who noticed this. What would have happened if I had just kept my mouth shut or simply not noticed? Oh well...I guess that is why a parent's involvement is so important! We know our children best!
I'll keep you posted.
PREPARING FOR SURGERY...EMOTIONALLY
Wow, tomorrow is the big day...open heart surgery on my sweet lil' baby. Yikes. Quite honestly, I am a little numb about it...it is far too stressful to even truly feel the intensity, the gravity of the situation. So much can happen tomorrow and the upcoming days and weeks...yet all I can do is trust in the doctors and most importantly have faith that God is with Max providing him much needed peace, strength and comfort.
I am still sick which makes these days much more difficult. I have to wear a mask at all times in the hospital and even then I am nervous about spreading germs, so I keep my visits to a minimum. I was praying with Maxwell this morning (with my mask on of course) and reminding him of the hundreds and hundreds of loving people praying for him...wishing him the very best tomorrow. It amazes me how many lives Mightly Max has touched...how we are all reminded to live life to the fullest and be truly grateful for all of our blessings. It is so easy to get caught up with day to day activities and be stressed over minor issues...yet here is this amazing little guy fighting for his life each and every day. And all during this, he manages to be incredibly sweet and adorable! How incredible is he!!!
Tomorrow will be a long and intense day...to say the least. Fortunately both of my moms, my sister, and a few friends will be here to support me and Max. Wewill do our best to keep everyone updated throughout the day.
Thank you everyone for all of your thoughtful calls, emails and cards...each has truly touched me and provided me much needed encouragement. Please rally up your prayer chains...I know I have asked before, but this is now more important than ever. Thank you!
I am still sick which makes these days much more difficult. I have to wear a mask at all times in the hospital and even then I am nervous about spreading germs, so I keep my visits to a minimum. I was praying with Maxwell this morning (with my mask on of course) and reminding him of the hundreds and hundreds of loving people praying for him...wishing him the very best tomorrow. It amazes me how many lives Mightly Max has touched...how we are all reminded to live life to the fullest and be truly grateful for all of our blessings. It is so easy to get caught up with day to day activities and be stressed over minor issues...yet here is this amazing little guy fighting for his life each and every day. And all during this, he manages to be incredibly sweet and adorable! How incredible is he!!!
Tomorrow will be a long and intense day...to say the least. Fortunately both of my moms, my sister, and a few friends will be here to support me and Max. Wewill do our best to keep everyone updated throughout the day.
Thank you everyone for all of your thoughtful calls, emails and cards...each has truly touched me and provided me much needed encouragement. Please rally up your prayer chains...I know I have asked before, but this is now more important than ever. Thank you!
