I've had requests for an update, sorry it has taken so long. Max has been home for a little over a month and doing great! He is still having his spells, but he is having them less frequently and they seem less severe. All of his doctors, thus far, have commented that he is doing better than he expected...we aren't sure how to take that :o).
We were able to get Max's 6 month pictures done by the FABULOUS Rebecca Peters. Keep an eye out on her blog for the pictures, RebeccaPetersBlog.com. She took some with Gunner, Doug, and I as well. We unfortunately didn't have Makayla with us during the pics, but we'll get family pictures later.
Max is still growing like crazy. They have limited his caloric intake. They don't want him gaining too much weight since his muscle development is behind. Hopefully they will be able to get his physical therapy and occupational therapy started soon!
He's going to daycare now. WE were a little concerned about him attending daycare instead of staying home with a nurse. Not because we didn't trust out babysitter, Angie, but because we weren't sure how he would react to the commotion of the other kids. He's doing great! He seems to love it there! All the kids love him. He watches them and shows interest in what they are playing, so ultimately I think it is a blessing that we didn't qualify for nursing care!
Gunner and Makayla are doing well with Max as well. Makayla is super nurturing, always has been. She is great with both him and Gunner. Gunner is very loving with Max, but having jealousy issues. He is gentle and sweet to Max, but has started refusing to sleep. We have to rock him until he is completely asleep, and then he usually climbs into bed with Doug and I at some point throughout the night. Any suggestions would be welcome! Right now we are trying bribery...if he sleeps throughout the night in his own bed, he gets candy in the morning. It doesn't work usually.
Makayla is on the gymnastics team. She really seems to enjoy it. I can't wait to go to her first meet. She is in pre-school and loves it. Gunner is also taking tumbling, but doesn't love it quite as much as his sister :o)
I guess that is our major update! God Bless to all!
Friday, September 30, 2011
Sunday, September 4, 2011
Max is home
OK, sorry for taking so long to update everyone on Max's status. He is doing so well. We have been home for two weeks now and we see improvements everyday.
We came home on August 21st, one day before his 5 month birthday, and were greeted by the entire neighborhood outside waving streamers, with signs in our yard, etc. It was quite the welcome home! He is on several monitors, an apnea and pulse-ox, and of course his oxygen. He sleeps well through the night. We have in-home nursing for at least the first 3 weeks, which is nice for our comfort level. He is averaging 2-4 spells a day, but he only had one yesterday and hasn't had any so far today!
He is gaining weight, and has started to try to lift his head. This morning he found his voice and it is so funny to listen to the noises he makes! We love having him home. We are slightly sleep deprived, but wouldn't trade all the sleep in the world for these moments!
Yesterday we celebrated Makayla and Gunner's birthdays with Doug's parents and grandparents. Just having them in the house was quite a bit of commotion for Max and he was rather fussy, but, with the exception of the one spell, handled it all very well. He slept most of today to make up for it.
I have one week left in my leave, then I have to go back to work. I'm going to miss being home with him, but am looking forward to getting into a regular family routine for all of us.
Being at home and watching the daily improvements with Max makes it so easy to see how blessed we are, and all the healing that God has provided for our family.
We came home on August 21st, one day before his 5 month birthday, and were greeted by the entire neighborhood outside waving streamers, with signs in our yard, etc. It was quite the welcome home! He is on several monitors, an apnea and pulse-ox, and of course his oxygen. He sleeps well through the night. We have in-home nursing for at least the first 3 weeks, which is nice for our comfort level. He is averaging 2-4 spells a day, but he only had one yesterday and hasn't had any so far today!
He is gaining weight, and has started to try to lift his head. This morning he found his voice and it is so funny to listen to the noises he makes! We love having him home. We are slightly sleep deprived, but wouldn't trade all the sleep in the world for these moments!
Yesterday we celebrated Makayla and Gunner's birthdays with Doug's parents and grandparents. Just having them in the house was quite a bit of commotion for Max and he was rather fussy, but, with the exception of the one spell, handled it all very well. He slept most of today to make up for it.
I have one week left in my leave, then I have to go back to work. I'm going to miss being home with him, but am looking forward to getting into a regular family routine for all of us.
Being at home and watching the daily improvements with Max makes it so easy to see how blessed we are, and all the healing that God has provided for our family.
Saturday, August 20, 2011
Parent Care Room
We successfully completed our first night in the parent care room. We didn't sleep very well, but will happily trade sleep for having Max home. Max slept like a champ. He was kinda pukey the day before, so I think he was pretty tired.
Right now my dad is with the kids at home, watching them. Hopefully they aren't giving him too much trouble...well I know Makayla isn't, so hopefully Gunner is behaving himself with Poopa.
This past week, two of Doug's brothers, Greg and Scott, came up to help work on the basement. They got so much done! Tiling is complete and most of the wood floors are put in. Then Heather and Janice came up to help me organize the upstairs, it looks great! We are really blessed to have the wonderful support system that we do!
We will spend one more night here in the Parent Care room, then we will be headed home! I can't wait, I can't wait, I can't wait! And it couldn't have been on a more perfect weekend! We actually have Makayla this weekend, so we get to come home and be a complete family!
Thank you all for the prayers and support that you have given us. We have a long road ahead of us, and ask that you still keep Max in your prayers. He is still having his spells. We are coming home on an apnea monitor, pulse-ox monitor and oxygen. So, will all of you pray for continued healing of Max, and that the spells will go away? Thanks and love to all! I'll update more once we make it home.
Right now my dad is with the kids at home, watching them. Hopefully they aren't giving him too much trouble...well I know Makayla isn't, so hopefully Gunner is behaving himself with Poopa.
This past week, two of Doug's brothers, Greg and Scott, came up to help work on the basement. They got so much done! Tiling is complete and most of the wood floors are put in. Then Heather and Janice came up to help me organize the upstairs, it looks great! We are really blessed to have the wonderful support system that we do!
We will spend one more night here in the Parent Care room, then we will be headed home! I can't wait, I can't wait, I can't wait! And it couldn't have been on a more perfect weekend! We actually have Makayla this weekend, so we get to come home and be a complete family!
Thank you all for the prayers and support that you have given us. We have a long road ahead of us, and ask that you still keep Max in your prayers. He is still having his spells. We are coming home on an apnea monitor, pulse-ox monitor and oxygen. So, will all of you pray for continued healing of Max, and that the spells will go away? Thanks and love to all! I'll update more once we make it home.
Sunday, August 7, 2011
answered prayers
Max is doing sooooo well! He hasn't had a spell in 29 hours, and he used to have 9-13 every twelve hours! They started him on the new anti-anxiety med and it has made all the difference! He is pretty sedated by the medicine, but sedate is better for him than agitated, since his agitated can have serious consequences. And, I'm sure that as he gets used to the meds they will have less of a sedative effect on him. But regardless, the point is, he is doing so well! yay Max! Praise God!
Thursday, August 4, 2011
8/4/11
We had a meeting with our doctors today. Most of the departments we have worked with were there, all except Immunology and ENT. Cardiology was there, they said his heart was stable. It is still large, but they expect it to decrease in size as the stress from his heart is reduced. Neurology was there and they said his hydrocephaly is stable as well. We don't know what the long-term prognosis for mental development is, all we can do is wait.
Dr. Beckerman, the pulomonologist was there as well. He had a little more news for us, good and bad. First he was able to describe the mechanism behind Max's breath holding spells, which no one else has been able to do. It is a rare form of apnea. Where as most apnea spells occur while sleeping, Max's occur while he is awake due to agitation. Also, most apnea spells occur on an inhale, so the breath is held in the lungs. In Max's case, it happens on an exhale. When a person cries, their vocal cords constrict, this is normal and Max does this. Max's vocal cords will constrict when he cries, and as he is crying he exhales, again normal...problem begins because he doesn't stop exhaling. He exhales to the point where there is almost no air left in his lungs. And this is the problem, there is no air left in his lungs for the circulating blood to pull oxygen out of.
They think it is a problem with his Medulla, that it isn't transmitting the signal for him to stop exhaling and take a breath. So finally we have some understanding of what is going on, sort of. The bad news is that they aren't sure if/when he will outgrow this, only time will tell. The neurologist pointed out that the structure of is Medulla is normal, good news, if the structure was malformed they would be able toss ay with certainty that the prognosis for Max is bad, but because it looks normal there is still a chance he can outgrow these spells.
So now we are working to come home. He will come home on anxiety medicine that is working well for him so far. Doug and I will have to go through training on how to take care of him during one of these spells. The reality of the situation is that the spells could potentially kill him. And every time he has a "bad" spell, he potentially causes brain damage. We obviously don't want any of that to happen. So they will train us how to recognize when to take action, and what type of action needs to be taken in each situation.
He will be coming home on Oxygen and monitors. As of right now, our fabulous babysitter, Angie, is willing to keep Max, hopefully after meeting him and seeing one of his spells she will still agree. And even more so, hopefully Max will do well at Angie's. Don't want the stimulation from the other kids to cause him more agitation/spells. If not, Doug and I may have to face living on one income.
I think the hardest part for us will be explaining to friends and family that because we want to limit the agitation and spells, Max isn't a baby that can be handled like normal babies. He won't be able to be passed around at family gatherings. Not everyone will be able to pick him up and cuddle him all the time. Life from here on out, changes drastically, and we have to do what is best for him and our family. Hopefully we will be able to find a good balance and be able to help Max without hurting feelings of those that love him. We will also have to find a way to make sure Makayla and Gunner aren't neglected.
Please don't think I'm complaining. I'm so thankful for my family, husband, and kids. I have faith in God that he is going to heal Max. I look at him and I just feel that it will all be OK. I've felt that way from the beginning, and it hasn't gone away. As Doug said tonight, "how many times have they given us the worst case scenario, and it all works out better than imagined?" And he is right. God is in our corner, and that is the best help we could ask for. We are just anxiously waiting to get our baby home to us so that we can be a complete family, everything else will be fine.
Dr. Beckerman, the pulomonologist was there as well. He had a little more news for us, good and bad. First he was able to describe the mechanism behind Max's breath holding spells, which no one else has been able to do. It is a rare form of apnea. Where as most apnea spells occur while sleeping, Max's occur while he is awake due to agitation. Also, most apnea spells occur on an inhale, so the breath is held in the lungs. In Max's case, it happens on an exhale. When a person cries, their vocal cords constrict, this is normal and Max does this. Max's vocal cords will constrict when he cries, and as he is crying he exhales, again normal...problem begins because he doesn't stop exhaling. He exhales to the point where there is almost no air left in his lungs. And this is the problem, there is no air left in his lungs for the circulating blood to pull oxygen out of.
They think it is a problem with his Medulla, that it isn't transmitting the signal for him to stop exhaling and take a breath. So finally we have some understanding of what is going on, sort of. The bad news is that they aren't sure if/when he will outgrow this, only time will tell. The neurologist pointed out that the structure of is Medulla is normal, good news, if the structure was malformed they would be able toss ay with certainty that the prognosis for Max is bad, but because it looks normal there is still a chance he can outgrow these spells.
So now we are working to come home. He will come home on anxiety medicine that is working well for him so far. Doug and I will have to go through training on how to take care of him during one of these spells. The reality of the situation is that the spells could potentially kill him. And every time he has a "bad" spell, he potentially causes brain damage. We obviously don't want any of that to happen. So they will train us how to recognize when to take action, and what type of action needs to be taken in each situation.
He will be coming home on Oxygen and monitors. As of right now, our fabulous babysitter, Angie, is willing to keep Max, hopefully after meeting him and seeing one of his spells she will still agree. And even more so, hopefully Max will do well at Angie's. Don't want the stimulation from the other kids to cause him more agitation/spells. If not, Doug and I may have to face living on one income.
I think the hardest part for us will be explaining to friends and family that because we want to limit the agitation and spells, Max isn't a baby that can be handled like normal babies. He won't be able to be passed around at family gatherings. Not everyone will be able to pick him up and cuddle him all the time. Life from here on out, changes drastically, and we have to do what is best for him and our family. Hopefully we will be able to find a good balance and be able to help Max without hurting feelings of those that love him. We will also have to find a way to make sure Makayla and Gunner aren't neglected.
Please don't think I'm complaining. I'm so thankful for my family, husband, and kids. I have faith in God that he is going to heal Max. I look at him and I just feel that it will all be OK. I've felt that way from the beginning, and it hasn't gone away. As Doug said tonight, "how many times have they given us the worst case scenario, and it all works out better than imagined?" And he is right. God is in our corner, and that is the best help we could ask for. We are just anxiously waiting to get our baby home to us so that we can be a complete family, everything else will be fine.
Wednesday, July 27, 2011
7/27/11
We had a meeting with our team of Doctors today. We had hoped they would be talking to us about going home, but that didn't happen. They said they didn't feel comfortable sending Max home with his breath-holding spells. They had performed an ECHO on Monday, and results from that showed an increased pressure across his pulmonary valve. They are going to do another ECHO tomorrow morning, in which I will be there to help induce a breath-holding spell, so that they can see what his heart does while he is having a spell. They think there is a possibility that there is blood shunting from the right to the left side of his heart, through the ASD that they left partially open during his heart surgery. Or the increased pressure at the pulmonary artery may be increasing the pressure in his lungs with constriction of the vessels...or something to that effect. If it is one of these two possibilities, they will treat it and see if it helps with the spells, or at least how he reacts to the spells. In a normal child's breath hold spells, the child may turn colors and possibly pass out, then start breathing again. With Max, because he doesn't have enough oxygen reserve, he desaturates quicker, and when the heart is not receiving enough oxygen, it could stop pumping. Obviously we don't want this to happen, so we are hoping that they can find more answers tomorrow.
Tuesday, July 19, 2011
7/19/11
Max's benefit was on Sunday, and a HUGE success. Thank you to all that participated. We can't even begin to describe how blessed we feel to know that many people want to help us, love us, and support us. Thank you, thank you, thank you!
Max is doing really well! As of this afternoon he is I.V. free! Which means I get to give him his first tub bath tomorrow! He's probably not going to like it, but I'm pretty excited about it! He is only on two meds, the Keppra for seizures, and the Adavan. They are working him up on feeds, and trying to increase the time between feeds at night so when he does get to come home we won't have to get up every couple of hours. We're getting closer!
Max is doing really well! As of this afternoon he is I.V. free! Which means I get to give him his first tub bath tomorrow! He's probably not going to like it, but I'm pretty excited about it! He is only on two meds, the Keppra for seizures, and the Adavan. They are working him up on feeds, and trying to increase the time between feeds at night so when he does get to come home we won't have to get up every couple of hours. We're getting closer!
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