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!
Friday, July 15, 2011
God is Good
We had our meeting with the neurosurgeon and our team of doctors this week. They gave us better news than we were expecting. The neurosurgeon, Dr. Ichbas, doesn't think he needs a shunt right now...not to say he won't in the future. But for now they are going to just keep monitoring him, so Yay! The Immunologist was there as well. They did confirm that his total B-cell count was lo in the 70's when they want them above 300. But once again he has them all confused, they noted that his IgM levels were low, but his IgG and IgA levels were normal. IgM is a precursor to IgG and IgA, so not sure what that means. His IgG levels may be partially from me, after 6 months IgG levels that he received from me will be going down, so we may understand more around then. They did confirm that he is making his own IgG and IgA, so that is the important part.
As of today, he has no I.V. meds! His Keppra and Adavan are now oral (through the feeding tube). He is up on his feeds to 100mls every three hours. He is doing really well!
So, the prayers are working, keep them coming! Thank you all, we love you!
As of today, he has no I.V. meds! His Keppra and Adavan are now oral (through the feeding tube). He is up on his feeds to 100mls every three hours. He is doing really well!
So, the prayers are working, keep them coming! Thank you all, we love you!
Monday, July 11, 2011
7/11/11
We had a good weekend. Max was doing well, and we spent Saturday in Salisbury for Doug's friend, Tony's wedding. The wedding was beautiful, as was the bride, and the dance was a lot of fun.
Max is extubated, and his blood gases are looking better than they ever have. The have weaned him off of two anti-convulsants. He is only on Keppra, and will probably be on that for a month or so. If he goes that long without a seizure, then they will start weaning him off of it as well.
They are doing head ultrasounds twice a week to measure they size of his ventricles. It is one of the signs of hydrocephaly that they are monitoring. They feel the ventricles are still dilating, and we have a meeting set up on Wednesday to talk to the neurosurgeon about the pro's and con's of a shunt. We obviously don't want to have to do that, however we need to have all the information before we can make a decision. Some of the other signs they look for are the head circumference and the feel of his fontanel. A typical head will grow half a centimeter each week, his has grown less than that, and his fontanel isn't too full, so I don't really know what to think.
They are also starting a blood panel to test for an immunological deficiency. They ran one last week and his IgM levels were low, however his t-cells, IgG, and IgA were normal. The IgG and IgA levels could be reflecting the antibodies he receives from me, so they are going to specifically test for antibodies he produces, and to see if he is showing an immune response to the vaccinations he received at two months. Pray for good results, being immune compromised is the last thing he needs on top of everything else.
Other than that, all is the same. We will be back in Salisbury for Max's benefit on Sunday. We look forward to seeing everyone again. I'll update as we get more information.
Max is extubated, and his blood gases are looking better than they ever have. The have weaned him off of two anti-convulsants. He is only on Keppra, and will probably be on that for a month or so. If he goes that long without a seizure, then they will start weaning him off of it as well.
They are doing head ultrasounds twice a week to measure they size of his ventricles. It is one of the signs of hydrocephaly that they are monitoring. They feel the ventricles are still dilating, and we have a meeting set up on Wednesday to talk to the neurosurgeon about the pro's and con's of a shunt. We obviously don't want to have to do that, however we need to have all the information before we can make a decision. Some of the other signs they look for are the head circumference and the feel of his fontanel. A typical head will grow half a centimeter each week, his has grown less than that, and his fontanel isn't too full, so I don't really know what to think.
They are also starting a blood panel to test for an immunological deficiency. They ran one last week and his IgM levels were low, however his t-cells, IgG, and IgA were normal. The IgG and IgA levels could be reflecting the antibodies he receives from me, so they are going to specifically test for antibodies he produces, and to see if he is showing an immune response to the vaccinations he received at two months. Pray for good results, being immune compromised is the last thing he needs on top of everything else.
Other than that, all is the same. We will be back in Salisbury for Max's benefit on Sunday. We look forward to seeing everyone again. I'll update as we get more information.
Tuesday, July 5, 2011
7/5/11
Well, we were successful in our quest to have a weekend focusing on Makayla and Gunner! We went to the Zoo on Saturday. It was hot, but fun! Sunday we wanted to go swimming but it rained, so we bought fireworks instead, set off a few that night and the rest on Monday. Monday afternoon we went fishing and caught lots of fish, then got the kiddie pool out for the kids to play in. We of course saw Max each day, but the weekend wasn't focused on him for a change.
Max is continuing to do better. When I visited him this afternoon he was squirmy and smiley! He was getting back to his normal personality, and it was such a relief to see. He was pulling at his breathing tube, getting angry when they changed his diaper, and following me with his eyes.
The neurologist came by to discuss his plan for the seizure meds. They took him off of the phosphinatoin this weekend, with no signs of seizures. They are going to do a three day wean of the phenobarbitol this week. They will leave him on the Keppra for a month or so, and as long as there is no seizure activity they will wean him off of that.
The immunologist came by as well, they are going to do an immune work-up, however based on previous testing, they don't expect to see an issue.
The nurse practitioner also came by after having talked to neurosurgery. They have been doing head ultrasounds twice a week. The latest one, they believe, shows that the ventricles are getting bigger. They think this will require a shunt, but haven't confirmed this. I, once again, told them that they will need to show me definitive proof that a shunt is the best option. We will, of course, do whatever it takes to get Max healthy, however I'm not inclined to let them put something in his brain on a whim. I'm no neurosurgeon, but his head size has not increased drastically, and his fontanelle is less full than it was three days ago, so I find it hard to believe he has hydrosephaly. We'll see.
The next two weekends will be busy. This coming weekend we will be in Salisbury for Doug's friend's wedding. I can't even think of going a day without seeing Max, so it will be a juggling act, but worth it. Then the following weekend we will be back in Salisbury for the Benefit luncheon Doug's family is throwing for Max. We were originally hoping to bring Max to his benefit, but it wasn't meant to be. As usual, we are keeping strong in our faith and continue to pray for the healing power of God. Thank you all for your support
Max is continuing to do better. When I visited him this afternoon he was squirmy and smiley! He was getting back to his normal personality, and it was such a relief to see. He was pulling at his breathing tube, getting angry when they changed his diaper, and following me with his eyes.
The neurologist came by to discuss his plan for the seizure meds. They took him off of the phosphinatoin this weekend, with no signs of seizures. They are going to do a three day wean of the phenobarbitol this week. They will leave him on the Keppra for a month or so, and as long as there is no seizure activity they will wean him off of that.
The immunologist came by as well, they are going to do an immune work-up, however based on previous testing, they don't expect to see an issue.
The nurse practitioner also came by after having talked to neurosurgery. They have been doing head ultrasounds twice a week. The latest one, they believe, shows that the ventricles are getting bigger. They think this will require a shunt, but haven't confirmed this. I, once again, told them that they will need to show me definitive proof that a shunt is the best option. We will, of course, do whatever it takes to get Max healthy, however I'm not inclined to let them put something in his brain on a whim. I'm no neurosurgeon, but his head size has not increased drastically, and his fontanelle is less full than it was three days ago, so I find it hard to believe he has hydrosephaly. We'll see.
The next two weekends will be busy. This coming weekend we will be in Salisbury for Doug's friend's wedding. I can't even think of going a day without seeing Max, so it will be a juggling act, but worth it. Then the following weekend we will be back in Salisbury for the Benefit luncheon Doug's family is throwing for Max. We were originally hoping to bring Max to his benefit, but it wasn't meant to be. As usual, we are keeping strong in our faith and continue to pray for the healing power of God. Thank you all for your support
Saturday, July 2, 2011
7/2/11
There isn't much new going on with Max. They still don't know what was going on with him, but he is showing improvement. I did have them test him for toxoplasmosis, but it had to be sent to a testing lab in California, so it will be a week or so before we know those results. They are also testing his spinal fluid for neurotransmitters and metabolites. Both of those tests take 10 days.
Yesterday they cut one of his three anti-seizure meds in half. So far no seizures! They are going to continue to slowly cut the meeds and see how he reacts. Once they feel confident he is seizure free they will talk about extubating him.
His GI tract is still a little messed up, but that is hopefully going to get better on its own, since there is still "movement" they aren't that concerned about it.
We are trying to have fun with Gunner and Makayla this weekend. With all that is going on we haven't been able to spend much time with them this summer. We cancelled our usual summer trips to Texas and St.Louis, so we are trying to find fun around KC. Today we went to the zoo, then visited Max in the afternoon. Tomorrow and Monday we will visit Max in the morning then go swimming and fishing, before we do fireworks on Monday evening. Hope everyone has a happy 4th of July and God Bless!
Yesterday they cut one of his three anti-seizure meds in half. So far no seizures! They are going to continue to slowly cut the meeds and see how he reacts. Once they feel confident he is seizure free they will talk about extubating him.
His GI tract is still a little messed up, but that is hopefully going to get better on its own, since there is still "movement" they aren't that concerned about it.
We are trying to have fun with Gunner and Makayla this weekend. With all that is going on we haven't been able to spend much time with them this summer. We cancelled our usual summer trips to Texas and St.Louis, so we are trying to find fun around KC. Today we went to the zoo, then visited Max in the afternoon. Tomorrow and Monday we will visit Max in the morning then go swimming and fishing, before we do fireworks on Monday evening. Hope everyone has a happy 4th of July and God Bless!
Subscribe to:
Posts (Atom)