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 me...at 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! :)
Monday, October 24, 2005
Sunday, October 23, 2005
HAPPY BIRTHDAY MAX!
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 sick...it's heartbreaking, but yet encouraging to know how much he has progressed already.
Hopefully the next month brings renewed hope and promising news!
Hopefully the next month brings renewed hope and promising news!
Friday, October 21, 2005
"GOD AWFUL LUNGS"
Yesterday the pulmonologist walks into Max's room, sits down and looks at me and says, "let me tell you Mom, Max has some god awful lungs...just god awful." Hmmm...that was about a slap in the face. Each doctor has such a different personality and this particular one is a bit blunt. While it is difficult to hear, I appreciate his directness. (He is extremely intelligent and respected throughout the nation for his expertise.) He had been reviewing all of the slides of Max's lungs since birth and was really disappointed in how bad they looked. He proceeded to tell me that we need to get him out of the hospital before RSV hits. He is very worried that getting sick would tip Max over.
So the good and the bad news is that they are considering sending Maxwell home IF he remains stable over the next few weeks. He must gain at least 20 grams a day. Unfortunately he lost over a pound (which is a lot for such a little guy!) in the last two weeks due to his surgery, recovery, etc. HOPEFULLY his new GTube will allow him to truly put some meat on his bones. As of tonight he gained two ounces (approx. 60 grams) which was really great considering he hadn't put anything on for days and days. Curious what his length will be (we measure on Sunday nights) because length is actually the most important because that means his lungs are growing too.
The good news of course is that it would be incredibly wonderful to have sweet Max finally at home. No more living at the hospital...wow, that would be great! It's been five months now (including bed rest).
The bad news is that he remains "medically fragile" and will require a lot of intense care. The docs are not sure how much nursing care we would have since he doesn't have any mechanical ventilation. I am really going to have to fight the insurance company to get some help. But for the most part, I would be Max's "nurse". The pulmonologist basically said very seriously..."are you truly willing to do this? Are you able to dedicate your time to Max's health, keep him isolated and healthy, growing and are you ready to handle an emergency...because there will be emergencies."
Quite scary but this is what needs to happen...and of course I will do whatever it takes to keep Max healthy. However, if he doesn't gain the weight, it will be a good indication that his "chronic respiratory failure" is worsening and then we will be looking at heart surgery in the next month or so. The pulmonologist said he wants to move the surgery up but knows he will have to battle it out with the cardiac team, who is wanting to delay for several months when Max is much bigger.
So next week I am meeting with the discharge nurse to at least get an understanding of what needs to happen for Max's departure. One of the most important issues is meeting with all of the local emergency personnel in Bellingham...the emergency room, the general hospital, the ambulance, etc. and "introduce" them to Max through his medical records, etc. That way when an emergency happens, they know all about him and his medical conditions and we don't have to waste any time.
I did this exercise the other day and it reminded me of how much Maxwell is working every day to breathe. Try to breathe about 80 breaths in just a minute...it will wear you out. Now think of Max doing that all day, every day. It just breaks my heart. He is spending all of his energy just to move air in and out of his body...something we take for granted.
So the good and the bad news is that they are considering sending Maxwell home IF he remains stable over the next few weeks. He must gain at least 20 grams a day. Unfortunately he lost over a pound (which is a lot for such a little guy!) in the last two weeks due to his surgery, recovery, etc. HOPEFULLY his new GTube will allow him to truly put some meat on his bones. As of tonight he gained two ounces (approx. 60 grams) which was really great considering he hadn't put anything on for days and days. Curious what his length will be (we measure on Sunday nights) because length is actually the most important because that means his lungs are growing too.
The good news of course is that it would be incredibly wonderful to have sweet Max finally at home. No more living at the hospital...wow, that would be great! It's been five months now (including bed rest).
The bad news is that he remains "medically fragile" and will require a lot of intense care. The docs are not sure how much nursing care we would have since he doesn't have any mechanical ventilation. I am really going to have to fight the insurance company to get some help. But for the most part, I would be Max's "nurse". The pulmonologist basically said very seriously..."are you truly willing to do this? Are you able to dedicate your time to Max's health, keep him isolated and healthy, growing and are you ready to handle an emergency...because there will be emergencies."
Quite scary but this is what needs to happen...and of course I will do whatever it takes to keep Max healthy. However, if he doesn't gain the weight, it will be a good indication that his "chronic respiratory failure" is worsening and then we will be looking at heart surgery in the next month or so. The pulmonologist said he wants to move the surgery up but knows he will have to battle it out with the cardiac team, who is wanting to delay for several months when Max is much bigger.
So next week I am meeting with the discharge nurse to at least get an understanding of what needs to happen for Max's departure. One of the most important issues is meeting with all of the local emergency personnel in Bellingham...the emergency room, the general hospital, the ambulance, etc. and "introduce" them to Max through his medical records, etc. That way when an emergency happens, they know all about him and his medical conditions and we don't have to waste any time.
I did this exercise the other day and it reminded me of how much Maxwell is working every day to breathe. Try to breathe about 80 breaths in just a minute...it will wear you out. Now think of Max doing that all day, every day. It just breaks my heart. He is spending all of his energy just to move air in and out of his body...something we take for granted.
Wednesday, October 19, 2005
OUT OF THE ICU
Sorry for the delay in my posts...I have received many worried calls and emails. Many of you have said you start your day with a cup of java and a visit to Max's blog. So thoughtful of you! It has been so crazy busy and frustrating the last several days and just haven't had the desire to write any updates...sorry!
Good news! Max was transferred back to the floor yesterday...yea! There was much controversy over moving him...half the docs thought he should stay, the other half said he's fairly stable, let's move him and we can always bring him back up to the ICU. I personally think he is doing much better...back to the "pre surgery" Max but with a little pain. We are trying to work through that.
But I am very glad to have him back on the floor and I can be in his room all the time again. I think I may have slept for only two hours...but it is worth it to be there to comfort him. And after much asking, I was able to get us a room by ourselves!!! So the privacy is very nice and relaxing. Most likely we will give that up soon as soon as a child comes in that needs to be isolated. But for the time being, we will enjoy our special room! :)
He is back on full feeds of fortified breast milk and despite Max's "gassiness" (which makes him super fussy), all is going well there. He is back under 8 pounds again, so we need to focus on fattening him up!!!
As far as the big picture...we are in a "wait and see" period. We postponed our care conference until next week so that we have time to see how Max recovers from surgery and any changes in his respiratory status. We have changed "teams"...we were under the care of craniofacial, but as of yesterday, pulmonary is taking over. Both teams are wonderful, but Max's lungs are his #1 issue right now so I am eager to work more closely with the pulmonary unit.
All for now...Eliz and her family are coming up this afternoon to visit. Always fun to share sweet Maxwell! :)
Good news! Max was transferred back to the floor yesterday...yea! There was much controversy over moving him...half the docs thought he should stay, the other half said he's fairly stable, let's move him and we can always bring him back up to the ICU. I personally think he is doing much better...back to the "pre surgery" Max but with a little pain. We are trying to work through that.
But I am very glad to have him back on the floor and I can be in his room all the time again. I think I may have slept for only two hours...but it is worth it to be there to comfort him. And after much asking, I was able to get us a room by ourselves!!! So the privacy is very nice and relaxing. Most likely we will give that up soon as soon as a child comes in that needs to be isolated. But for the time being, we will enjoy our special room! :)
He is back on full feeds of fortified breast milk and despite Max's "gassiness" (which makes him super fussy), all is going well there. He is back under 8 pounds again, so we need to focus on fattening him up!!!
As far as the big picture...we are in a "wait and see" period. We postponed our care conference until next week so that we have time to see how Max recovers from surgery and any changes in his respiratory status. We have changed "teams"...we were under the care of craniofacial, but as of yesterday, pulmonary is taking over. Both teams are wonderful, but Max's lungs are his #1 issue right now so I am eager to work more closely with the pulmonary unit.
All for now...Eliz and her family are coming up this afternoon to visit. Always fun to share sweet Maxwell! :)
Monday, October 17, 2005
MORE TESTS
Today marks yet another specialist joining the "Maxwell Medical Team"...neurology is consulting on him today. They are performing an EEG on him and we will discuss his "episodes" of irregular temp, heart rate, etc. I believe we have nearly every specialist involved now...yikes. (Even had the specialist nurse for "skin conditions" in today because Max has a really, really bad bruise on his arm due to too many IV pokes.)
Cardiology is reviewing Max's status today, and there was once again talk in rounds this morning about moving up the heart surgery. Not sure the cardiologist will agree...we'll see. They definitely wanted him bigger...the bigger he is, the more successful the surgery. And little Max is still only 8 pounds...much bigger than before, but still quite fragile.
Met with the new attending pulmonologist today...they change every week so I have to review "Max" each time with them. I think he will be very helpful...always good to have a fresh perspective and possibly a new idea to help Max's lung situation. He was encouraged by my belief that Max overall has become stronger and more alert in the last month.
ENT is not yet ready to meet with me regarding the CT scan. He wanted to consult with another ENT first, which concerns me. Usually when one doc wants to talk with another, there isn't promising news....but again, we'll see.
Sweet Maxwell is "stable" right now and we enjoyed lots of cuddling this morning. They started the tiniest amounts of Pedialyte into his stomach today...hoping he tolerates that well so they can increase the feeds as the day goes on. Eventually they will reintroduce the breast milk and we can get back to putting meat on his bones.
Needless to say, today is a very stressful and confusing day...thanks for your thoughts and prayers.
Cardiology is reviewing Max's status today, and there was once again talk in rounds this morning about moving up the heart surgery. Not sure the cardiologist will agree...we'll see. They definitely wanted him bigger...the bigger he is, the more successful the surgery. And little Max is still only 8 pounds...much bigger than before, but still quite fragile.
Met with the new attending pulmonologist today...they change every week so I have to review "Max" each time with them. I think he will be very helpful...always good to have a fresh perspective and possibly a new idea to help Max's lung situation. He was encouraged by my belief that Max overall has become stronger and more alert in the last month.
ENT is not yet ready to meet with me regarding the CT scan. He wanted to consult with another ENT first, which concerns me. Usually when one doc wants to talk with another, there isn't promising news....but again, we'll see.
Sweet Maxwell is "stable" right now and we enjoyed lots of cuddling this morning. They started the tiniest amounts of Pedialyte into his stomach today...hoping he tolerates that well so they can increase the feeds as the day goes on. Eventually they will reintroduce the breast milk and we can get back to putting meat on his bones.
Needless to say, today is a very stressful and confusing day...thanks for your thoughts and prayers.
