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.
Friday, October 21, 2005
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.
HEART ISSUE?
Hmmm...not sure what to make of this evening. Max's heart rate has been quite low and irregular. So around midnight they did an EKG on his heart and there appeared to be some irregularity and they are going to consult with cardiology in the morning. I don't think this is anything to be TOO concerned with, but I'm really not sure. We'll wait and see what the cardiologist says. Everyone keeps asking me what the plan is for his heart...many are surprised the VSD has not already been repaired. Part of me would love to go ahead and get it fixed and hopefully eliminate some of his issues, but an open heart surgery on such a small, fragile guy might not be for the best.
Hopefully soon I can relax and head to bed...it's getting late. Tomorrow will be a busy day with many hefty discussions. In addition to the more pressing issues regarding his heart and lung status, I will also be meeting with ENT to discuss the results of the CT scan.
Hopefully soon I can relax and head to bed...it's getting late. Tomorrow will be a busy day with many hefty discussions. In addition to the more pressing issues regarding his heart and lung status, I will also be meeting with ENT to discuss the results of the CT scan.
Sunday, October 16, 2005
NOT A GOOD WEEKEND
What a weekend. It has certainly been a roller coaster. Max was successfully "somewhat" extabated on Friday afternoon. At first, he didn't want to breathe, which of course was not fun to watch, but he snapped to it soon enough. Soon after extabation, he was not doing very well. He was working very hard to breathe and his blood gases were not looking good. His heart rate and blood pressure were rising (good indication of pain after surgery) so they increased his pain medication.
However, then his heart rate dropped significantly and he was having major bradychardia (low heart rate) and the nurse literally was flicking his head and shaking him to snap him out of it. Again, that wasn't fun to watch either. He remained very out of it until the next day (Saturday). He was off and on mild sedation throughout the day but that night he began to show signs of signifant pain again. Some pain meds seemed to do the trick and in the middle of the night, they transferred him to the floor because he seemed to be more stable...and another child needed the bed in the ICU. We were thinking this was a good sign.
However, today Max took a turn for the worse and they quickly moved him back to the ICU. I had gone home late last night because the hospital was out of sleeping rooms for the parents and I had too much breast milk in the fridge. I was planning to head back to the hospital late morning, but then I get a call from the doctors basically saying, "you should get here soon. Max isn't doing well."
His heart rate, temperature, blood pressure, respiratory rate and blood gases were all going crazy....and everyone was very concerned what was going on. They were thinking they would need to reintubate him, but just in time...he seemed to chill out just enough. By the time I arrived back from Bellingham (we live about 1 1/2 hours away from Seattle), Max was already doing much better than just a few hours before. Then for the next two hours he sucked on his binky like a sucking champ. But he definitely was still not himself...moaning and moving around in pain and exhaustion and very warm with his fever (a solid 105 for too long...but finally went down after 5 hours), yet sucking away like everything was fine. Everyone is very confused and quite concerned. They said he looked absolutely awful this morning.
Tonight he is still acting like he is pain, and they think there is a possible infection. On top of everything else, I imagine he is quite hungry. He has been off of his feeds now for four days. We are hoping we get the green light for feeds tomorrow.
I have no idea what tonight or the next few days hold for Maxwell. Please continue to keep him in your thoughts and prayers.
Speaking of prayers, we did have quite an incredibly intense experience yesterday. I was pretty distraught, as you can imagine, and sitting in Max's room very worried. The mom of Max's next door hospital neighbor, a 6 year old with terminal cancer (we are all praying for a miracle for little Timmy), asked if it was ok if a group of people, who were visiting Timmy, came in to pray for Max. Wow, what an experience....can't even begin to describe. There were four young men and women (late teens, early twenties) and they were not your "stereotypical" church going group...which made it all the more amazing. Quite honestly, they looked like they should have been on a video on BET or MTV...not in the hospital quoting scripture and praying for Maxwell. They were INCREDIBLE. They were there for at least 30 or 45 minutes...each of them passionately (and I mean PASSIONATELY) praying for Max and praising his spirit and our love and faith in the Lord. I extend my deepest thanks to Leah for making that happen. One of the men said they just felt drawn to pray for Max...and I am so glad they did. Their enormous faith gave me strength and renewed hope.
Again, please keep Max in your prayers and I hope to offer you a positive post tomorrow. Off to love on my lil' guy a little more...
However, then his heart rate dropped significantly and he was having major bradychardia (low heart rate) and the nurse literally was flicking his head and shaking him to snap him out of it. Again, that wasn't fun to watch either. He remained very out of it until the next day (Saturday). He was off and on mild sedation throughout the day but that night he began to show signs of signifant pain again. Some pain meds seemed to do the trick and in the middle of the night, they transferred him to the floor because he seemed to be more stable...and another child needed the bed in the ICU. We were thinking this was a good sign.
However, today Max took a turn for the worse and they quickly moved him back to the ICU. I had gone home late last night because the hospital was out of sleeping rooms for the parents and I had too much breast milk in the fridge. I was planning to head back to the hospital late morning, but then I get a call from the doctors basically saying, "you should get here soon. Max isn't doing well."
His heart rate, temperature, blood pressure, respiratory rate and blood gases were all going crazy....and everyone was very concerned what was going on. They were thinking they would need to reintubate him, but just in time...he seemed to chill out just enough. By the time I arrived back from Bellingham (we live about 1 1/2 hours away from Seattle), Max was already doing much better than just a few hours before. Then for the next two hours he sucked on his binky like a sucking champ. But he definitely was still not himself...moaning and moving around in pain and exhaustion and very warm with his fever (a solid 105 for too long...but finally went down after 5 hours), yet sucking away like everything was fine. Everyone is very confused and quite concerned. They said he looked absolutely awful this morning.
Tonight he is still acting like he is pain, and they think there is a possible infection. On top of everything else, I imagine he is quite hungry. He has been off of his feeds now for four days. We are hoping we get the green light for feeds tomorrow.
I have no idea what tonight or the next few days hold for Maxwell. Please continue to keep him in your thoughts and prayers.
Speaking of prayers, we did have quite an incredibly intense experience yesterday. I was pretty distraught, as you can imagine, and sitting in Max's room very worried. The mom of Max's next door hospital neighbor, a 6 year old with terminal cancer (we are all praying for a miracle for little Timmy), asked if it was ok if a group of people, who were visiting Timmy, came in to pray for Max. Wow, what an experience....can't even begin to describe. There were four young men and women (late teens, early twenties) and they were not your "stereotypical" church going group...which made it all the more amazing. Quite honestly, they looked like they should have been on a video on BET or MTV...not in the hospital quoting scripture and praying for Maxwell. They were INCREDIBLE. They were there for at least 30 or 45 minutes...each of them passionately (and I mean PASSIONATELY) praying for Max and praising his spirit and our love and faith in the Lord. I extend my deepest thanks to Leah for making that happen. One of the men said they just felt drawn to pray for Max...and I am so glad they did. Their enormous faith gave me strength and renewed hope.
Again, please keep Max in your prayers and I hope to offer you a positive post tomorrow. Off to love on my lil' guy a little more...
