Summer is finally here and we are just starting to slow down. Max took swim lessons and absolutely loved it. We were fortunate enough to find a friend through church that happens to be a physical therapy student to get Max comfortable in the pool. She also incorporated physical therapy activities to help with Max's overall strength. It was a great combination and we are working on continuing with lessons throughout the summer. Max was out of breath quite a bit, but it didn't stop him from wanting to do more.
Max's sats are slowly starting to trend down. In the month of May it seemed like he was suffering from some sort of virus that was causing him to be breathless and his O2 to drop. But after he recovered from the virus his O2 never came back up. He was holding steady at around 85% oxygen and now he's down to about 77%. Our pediatrician has discussed all of this with the cardiologist and they have decided to move forward with presenting Max's case and setting a surgery date. He will hopefully be presented next Monday and we will know a surgery date. The cardiologist said that it probably will not be in July, so we'll see.
Wednesday, June 11, 2014
Friday, May 9, 2014
Max's songs
We made a middle of the night ER run Wednesday night because Max had croup and was having trouble breathing. Croup is scary stuff. He was gasping for air and started sweating because he was trying so hard to breathe. He was retracting so bad we were pretty worried and decided to head to the ER. Through all of it, he wasn't turning blue, so I knew he was still getting good circulation but I was praying hard for his guardian angel to protect him. Texas Children's has its Main Campus in the medical center and it also has another location sort of closer to us. We opted to not go to the Main Campus because we've witnessed how crazy their ER can be. It was a wise choice because we were in and out of the ER in about 2.5 hours. They gave him a steroid, some medicine, took a chest x-ray, and we were on our way. The ER doctor was incredible and our nurse was AMAZING. I just can't say enough about Texas Children's. It blows me away every time. On the way home Max randomly started singing these lyrics from a Ryan Stevenson song:
Jesus, I don't want anything coming in between you and me.
Jesus, it doesn't matter what I have to go through.
I'm holding nothing back, nothing back from you.
Jesus, it doesn't matter what I have to go through.
I'm holding nothing back, nothing back from you.
Ironically, that song also talks about a broken heart. This is the third time we've either left an appointment or a procedure and Max breaks in to song. After his catheter in December he started singing:
Jesus loves me! This I know,
For the Bible tells me so.
Little ones to Him belong;
They are weak, but He is strong.
After our appointment in February, he started singing these lyrics from Colton Dixon:
If I had no voice, if I had no tongue
I would dance for You like the rising sun
And when that day comes and I see Your face
I will shout Your endless, glorious praise.
I would dance for You like the rising sun
And when that day comes and I see Your face
I will shout Your endless, glorious praise.
At this appointment we were fully anticipating that the doctors would schedule his next surgery. But at the end of the appointment, Dr. Kyle told us that he looked better that day than he did six months ago in August. He said he had no medical explanation for it. Surgery has been put off and we don't have to go back until this August.
Thursday I was pretty tired from basically pulling an all nighter, but I kept thinking about all these songs that Max sings. He inspires me so much. It could be that this is all coincidence, but I choose not to look at it that way. God is in complete control of Max's life and all of his circumstances. This I know for sure. And God is constantly winking at me and sometimes smacking me in the face to remind me to just let go and TRUST.
Sunday, May 4, 2014
Max turns 3!
Dear Max,
I just can't believe it. You are 3! We celebrated with a lot of friends and family, a bounce house, pizza, and a Lightning McQueen cake. You had so much fun. In the past, you didn't like bounce houses much but you were able to get in there and bounce before all your guests arrived and you decided that you loved it. I even went down the slide with you!
You amaze me everyday, Max. You love to play with your cars and with your blocks. You build intricate race tracks, houses, and towers. You love to play with legos and build all kinds of imaginary places and cars. You go to school two days a week and you absolutely love it. Your teachers say that you play so hard that you are always the first one to go down for nap. Must be nice for them because you don't want to take naps for me anymore. You absolutely love to sing and dance. You can sing "Life is a Highway," "I want to see you be Brave," and almost ALL of the songs from Frozen. What I absolutely LOVE about you, Max, is how thoughtful you can be. You often tell me without prompting things like, "Thank you Mom for cooking dinner," and "Thank you Mom for my party. It was a lot of fun." It melts my heart. You also tell me that you love me to the Milky Way and back because that seems farther than the moon. Such charm! Sometimes you get frustrated and yell and scream when I put you in time out, but you always end up telling me that you love me. You love to play with Clare. You share a room with her in our little house and I love listening in on your conversations before bed. One day when Clare was sad about school, you told her that you loved her and who cares what other people say. I was so proud! When Clare is at swim practice, you don't even want to play on the play ground because you want to watch sissy swim. You sit patiently by the pool and cheer her on. You ask me all sorts of silly questions like, "What if you had 5 arms mommy?" and I just have to laugh.
Recently you asked about the big scar that runs down the front of your chest. I told you it was your zipper because sometimes doctors have to open it and look at your heart. You were so brave when I told you that. You asked me why they just couldn't use the machine (the echo cardiogram) to look at your heart. Such a problem solver! We haven't talked about your upcoming surgery this year because I don't really have the words to tell you. The truth is, I'm not sure I'm as brave as you Max. You are becoming so much more aware that there is something different about you, but you never seem to let it stop you. You always want to race and you run and run your little lungs out. It really inspires me.
Mr. Man, I love you so much. You inspire and push me everyday. You are perfect inside and out, and I can't wait to see what the next year brings!
Love,
Mom
I just can't believe it. You are 3! We celebrated with a lot of friends and family, a bounce house, pizza, and a Lightning McQueen cake. You had so much fun. In the past, you didn't like bounce houses much but you were able to get in there and bounce before all your guests arrived and you decided that you loved it. I even went down the slide with you!
You amaze me everyday, Max. You love to play with your cars and with your blocks. You build intricate race tracks, houses, and towers. You love to play with legos and build all kinds of imaginary places and cars. You go to school two days a week and you absolutely love it. Your teachers say that you play so hard that you are always the first one to go down for nap. Must be nice for them because you don't want to take naps for me anymore. You absolutely love to sing and dance. You can sing "Life is a Highway," "I want to see you be Brave," and almost ALL of the songs from Frozen. What I absolutely LOVE about you, Max, is how thoughtful you can be. You often tell me without prompting things like, "Thank you Mom for cooking dinner," and "Thank you Mom for my party. It was a lot of fun." It melts my heart. You also tell me that you love me to the Milky Way and back because that seems farther than the moon. Such charm! Sometimes you get frustrated and yell and scream when I put you in time out, but you always end up telling me that you love me. You love to play with Clare. You share a room with her in our little house and I love listening in on your conversations before bed. One day when Clare was sad about school, you told her that you loved her and who cares what other people say. I was so proud! When Clare is at swim practice, you don't even want to play on the play ground because you want to watch sissy swim. You sit patiently by the pool and cheer her on. You ask me all sorts of silly questions like, "What if you had 5 arms mommy?" and I just have to laugh.
Recently you asked about the big scar that runs down the front of your chest. I told you it was your zipper because sometimes doctors have to open it and look at your heart. You were so brave when I told you that. You asked me why they just couldn't use the machine (the echo cardiogram) to look at your heart. Such a problem solver! We haven't talked about your upcoming surgery this year because I don't really have the words to tell you. The truth is, I'm not sure I'm as brave as you Max. You are becoming so much more aware that there is something different about you, but you never seem to let it stop you. You always want to race and you run and run your little lungs out. It really inspires me.
Mr. Man, I love you so much. You inspire and push me everyday. You are perfect inside and out, and I can't wait to see what the next year brings!
Love,
Mom
Thursday, January 2, 2014
Heart Catheter #3
Max was scheduled way back in September for a cardiac MRI and a heart catheter in preparation for his third surgery. Because of a pretty continuous ear infection since that time, it was pushed back until December 30th. Not wanting to push it back any more, we avoided the world 2 weeks prior to the procedure which meant Max missed the last week of school and we skipped out on the big family Christmas gathering. We still had a very joyful celebration with Edgar's parents and brothers and with my parents.
Like crazy people, we decided to move Max from his crib to a bed and we moved Max in with Clare for the next 6 months or so until we can move the boys in with each other. We decided to do this a couple of days before his procedure. What can I say? Cabin fever will force you to start tackling those house projects you've been putting off! Needless to say, the night before his procedure was really interesting and I think he finally went to sleep around 10:45. (He went down around 8:30!) I couldn't sleep at all. We got up at 4am and were out of the house by 5am. Houston traffic is awesome at that time (ha!) and we checked in at 5:55am. Max slept the whole way there. He woke up in the MRI waiting room and we read some books and watched some cartoons. He was incredibly happy and his mood gave us a lot of peace. We were called back around 6:30 and all the pre-procedure questioning started. The Cardiovascular Anesthesiologist said we were only going to do some light sedation for the MRI. When we pointed out that he was going on to the Cath Lab after this, the Doctor quickly said that light sedation is not what we are going to do and he was glad we said something. Can I get you some coffee doctor? They wanted to start his IV before he went down and Edgar and I said no. Max is notoriously a hard stick and I didn't want the trauma of trying to poke him and then getting him to take the mask with the anesthesia. (He has 9 pokes on his body where they tried to get the IV! He came out with two open lines on his feet. Momma and Dad know best) After some convincing, the doctors agreed and decided to do all of that once he was asleep. They gave him versed to ease the transition and then got Max to put the mask on. We were there for all of it and even with the versed, he was crying with the mask on while Edgar held him so he wouldn't fall off the bed. It was pretty emotional for both of us, but I wouldn't have done it any differently. We walked out in tears and went to go check him in for the catheter and wait. Although we've done this a lot, it never gets any easier. We sort of know what to expect and we know the things we need to demand (like the IV situation) and this time around we know that we need to make sure the doctors know exactly what the plans are for the day.
We signed paperwork for the Cath and then checked in on the 17th floor with the Heart Center. We waited in the pretty plush (full kitchen with meals provided, reclining seats, board games, books, magazines, TVs, etc., basically anything to distract you from what your child is going through) heart center waiting room for a little while, but it's hard for Edgar and I to sit there. Families are going through so much and you can feel the emotion and nervous tension. One very young couple was facing the reality that there was not much the doctors could do for their daughter. Most of the time when I'm in the waiting room, I just watch and listen to other people and just pray. It takes a lot to not just sit there and cry all day. Sitting there makes you realize that what Max is going through is nothing. We're not faced with the suffering that other families go through, and Edgar and I constantly remind ourselves that we don't want to forget for a second all these moments in the hospital.
Our cath Doctor met with us and told us the all the risks and her plan for the catheter. The major goal of both the MRI and the catheter is to see if they can patch the hole in Max's heart and give him full function of his heart. Up until now, they haven't been able to get good enough pictures of the hole. Dr. Heinle looked at it both times during his last two surgeries, and last surgery he almost went for it, but then decided not to. So there was a lot of hope with these procedures. Unfortunately, after the cath, the doctor didn't have much to say which leads us to believe that she wasn't able to see the hole either.
The MRI and the cath took about 7 hours and then Max was in recovery until about 7pm. We spent the day chugging coffee, walking the hospital, and reading (No time like the present time to start Pride and Prejudice!). Edgar wanted to play hide and seek in the hospital, but like a responsible adult, I declined his invitation. He did, however, not turn left for most of the day which led to some pretty hilarious entrances and exits from elevators and doors. (Zoolander has a very real and lasting impact!) We only made fun of a few residents. They keep getting younger and younger. Cute. Then Edgar discovered Fifa '14 on the iPad and he was gone. Oh well, back to Mr. Darcy.
It was a long day. We both felt a lot of peace which can only be attributed to all of the prayers. These days are supposed to be really stressful, but we didn't experience any of that. Our cardiologist called us from his vacation (!) to check in with us and tell us that he's hoping to present Max's case within the next couple of weeks and we'll discuss it in February. It seems like a long time to wait, but I'm grateful that his surgery will more than likely be past flu season. Thank goodness. This next surgery will be rough, but I can only hope that he will recover quickly and all of this will be behind of us. We've had to sort of regain Max's trust because all he knows was that he was in pain and why would we do that to him. He told me that he didn't like it and that his boo boo that he got in the big hospital hurt him a lot. Sad. I just keep telling him that it's only going to make him bigger and stronger. He's so brave.
Like crazy people, we decided to move Max from his crib to a bed and we moved Max in with Clare for the next 6 months or so until we can move the boys in with each other. We decided to do this a couple of days before his procedure. What can I say? Cabin fever will force you to start tackling those house projects you've been putting off! Needless to say, the night before his procedure was really interesting and I think he finally went to sleep around 10:45. (He went down around 8:30!) I couldn't sleep at all. We got up at 4am and were out of the house by 5am. Houston traffic is awesome at that time (ha!) and we checked in at 5:55am. Max slept the whole way there. He woke up in the MRI waiting room and we read some books and watched some cartoons. He was incredibly happy and his mood gave us a lot of peace. We were called back around 6:30 and all the pre-procedure questioning started. The Cardiovascular Anesthesiologist said we were only going to do some light sedation for the MRI. When we pointed out that he was going on to the Cath Lab after this, the Doctor quickly said that light sedation is not what we are going to do and he was glad we said something. Can I get you some coffee doctor? They wanted to start his IV before he went down and Edgar and I said no. Max is notoriously a hard stick and I didn't want the trauma of trying to poke him and then getting him to take the mask with the anesthesia. (He has 9 pokes on his body where they tried to get the IV! He came out with two open lines on his feet. Momma and Dad know best) After some convincing, the doctors agreed and decided to do all of that once he was asleep. They gave him versed to ease the transition and then got Max to put the mask on. We were there for all of it and even with the versed, he was crying with the mask on while Edgar held him so he wouldn't fall off the bed. It was pretty emotional for both of us, but I wouldn't have done it any differently. We walked out in tears and went to go check him in for the catheter and wait. Although we've done this a lot, it never gets any easier. We sort of know what to expect and we know the things we need to demand (like the IV situation) and this time around we know that we need to make sure the doctors know exactly what the plans are for the day.
We signed paperwork for the Cath and then checked in on the 17th floor with the Heart Center. We waited in the pretty plush (full kitchen with meals provided, reclining seats, board games, books, magazines, TVs, etc., basically anything to distract you from what your child is going through) heart center waiting room for a little while, but it's hard for Edgar and I to sit there. Families are going through so much and you can feel the emotion and nervous tension. One very young couple was facing the reality that there was not much the doctors could do for their daughter. Most of the time when I'm in the waiting room, I just watch and listen to other people and just pray. It takes a lot to not just sit there and cry all day. Sitting there makes you realize that what Max is going through is nothing. We're not faced with the suffering that other families go through, and Edgar and I constantly remind ourselves that we don't want to forget for a second all these moments in the hospital.
Our cath Doctor met with us and told us the all the risks and her plan for the catheter. The major goal of both the MRI and the catheter is to see if they can patch the hole in Max's heart and give him full function of his heart. Up until now, they haven't been able to get good enough pictures of the hole. Dr. Heinle looked at it both times during his last two surgeries, and last surgery he almost went for it, but then decided not to. So there was a lot of hope with these procedures. Unfortunately, after the cath, the doctor didn't have much to say which leads us to believe that she wasn't able to see the hole either.
The MRI and the cath took about 7 hours and then Max was in recovery until about 7pm. We spent the day chugging coffee, walking the hospital, and reading (No time like the present time to start Pride and Prejudice!). Edgar wanted to play hide and seek in the hospital, but like a responsible adult, I declined his invitation. He did, however, not turn left for most of the day which led to some pretty hilarious entrances and exits from elevators and doors. (Zoolander has a very real and lasting impact!) We only made fun of a few residents. They keep getting younger and younger. Cute. Then Edgar discovered Fifa '14 on the iPad and he was gone. Oh well, back to Mr. Darcy.
It was a long day. We both felt a lot of peace which can only be attributed to all of the prayers. These days are supposed to be really stressful, but we didn't experience any of that. Our cardiologist called us from his vacation (!) to check in with us and tell us that he's hoping to present Max's case within the next couple of weeks and we'll discuss it in February. It seems like a long time to wait, but I'm grateful that his surgery will more than likely be past flu season. Thank goodness. This next surgery will be rough, but I can only hope that he will recover quickly and all of this will be behind of us. We've had to sort of regain Max's trust because all he knows was that he was in pain and why would we do that to him. He told me that he didn't like it and that his boo boo that he got in the big hospital hurt him a lot. Sad. I just keep telling him that it's only going to make him bigger and stronger. He's so brave.
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