October

We have been on a self imposed hiatus from visitors, but it is over on Friday! We are headed to Salisbury for Kathleen's wedding and we can't wait to see everyone! Gunner was on the phone with Memaw and Papaw tonight. He kept telling Papaw, "I like Sissy"...boy does love his sister, God help any of her future boyfriends, he's a mean little toot, they don't stand a chance! But I think he is excited to see Memaw and Papaw. He'll be even more excited when Owen and Aiden get there. I can't wait to get some pictures of Aiden and Max together. Doug and I ordered a new Canon Rebel T2i for our anniversary, the UPS tracking said it will be here on Friday. Of course it requires a signature, so hopefully we will be here to sign for it and can use it this weekend!

Last weekend we went to the pumpkin patch. It was so much fun. Max did great with all the new sights and sounds. There was a petting zoo for all the kids, Makayla really liked the holstein calf, Gunner liked the llamas. They had pony rides which both kids loved! I think I have Makayla convinced to take horseback riding lessons in a year or two! We watched a Toy Story skit, and the kids went through a hay stack maze, and obstacle course. You should have seen Gunner climb the fences in the obstacle course! He was half way through the course before Doug caught up to him!

Makayla has her first tumbling competition next month, in Kansas. I can't wait to see it! She seems pretty excited about it as well. Gunner is still in tumbling, although I don't think he enjoys it as much as his sister. He spends a lot of the class time looking at the instructors like the are dense for asking him to jump on a trampoline or sit on a mat :o) oh well.

Max was sick this week. He caught a cold that had been going around the house, he was the last one to get it. Poor guy. He did well, though. All the doctors expected him to end up hospitalized with any cold he got, but we have managed to stay home. When his temperature reaches 101F we have been instructed to get him to the emergency room. I'm assuming it is because he has a history of febrile seizures, but don't really know the exact reasoning. We managed to keep his temperature down below 101F, but barely. His heart rate was also a little faster than normal, but nothing extreme. It had me in fits of nervousness, I stayed home for three days with him. But he has kept his fever down today, so I think it is safe for him to go back to daycare tomorrow.

At the suggestion of my friend, Teri, we tried gravity feeds on Max. Did his first one tonight. So far so good. She tried them on her son, Finley, with some success. If Max can keep the food down this way it will take or feeding time from about 1.5 hours every three hours to 5-15 minutes every three hours! That would be great, for all of us involved.

While I was at home this week, I saw a documentary on a little girl that had a huge tumor on her face, and all of the surgeries they have done to remove the tumor and reconstruct her face. It was so sad, and made me realize how blessed we really are. Thank you, God, for all the healing graces you have bestowed on my family. Thank you, everyone, for all the prayers you have offered up for our family. We have much to be grateful for, we are truly blessed. My Aunt sent me this verse, and I like it and want to share it. 1Peter 5:10 "and the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast."

All that have prayed for Max, will you please keep our little friend, Finley, and his family in your prayers? He is going in for open heart surgery November 2nd.

way past due

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!

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.

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.

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!

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.

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.

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!

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!

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.

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

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!

6/26/11

Sunday morning we arrived to Max having seizures. They were minor, started in his right arm and eyelids then into his left arm. We don't really know what is causing them. They didn't think they were epileptic in nature. Could be due to infection (that they still don't know is there), the fever, or his lack of sleep. From Thursday to Sunday they never noticed a good sleep pattern for him. They gave him some phenobarbytol to help, and it did for a while. Between Sunday and Monday he got three doses of phenobarbytol, which is the maximum he could get, and the seizures were still breaking through. As of this morning (monday) they are currently performing an EEG, which of course he has not had a seizure to show them. They are going to get an MRI as well.

His blood cultures, spinal fluid, and respiratory aspirate are all still negative for bacterial infection...the one blood culture that came up positive has been confirmed as Staph. campi, and a contaminant. They have sent in cultures for PCR multiplex to test for viral infections.

As the doctor has explained to us this morning, he is presenting signs for sepsis. He is negative for bacterial infection, so it may still be viral, and all they can do at that point is supportive therapy, until the infection is gone.

Wouldn't you know it, as soon as they started taking off the EEG buttons he had a seizure, that's my boy.

They are trying to schedule our group meeting for Wednesday. Doug and I have requested as much of his records as are available. We want to put together a time line of events for him, and a list of questions to ask the doctors. If anyone has any ideas/questions/thoughts please feel free to let us know. As many minds as we can get on this we would like!

back to square one...

yesterday they thought Max had a Staph infection. One of the three blood cultures they took on thursday was growing staph, however as of this morning the other two cultures were still negative. So today we are thinking the staph growth was just a contaminant in the culture. So they were thinking viral, but as of this afternoon the cultures were still negative for viral activity and his blood counts didn't support viral infection. So once again, we have no idea what is wrong with our baby. They are still treating him for bacterial infections with antibiotics, and in order to cover all bases they are also treating him for fungal infections. The heart surgeon did tell our doctors that his thymus looked small. So, once he is past all this mess going on right now they will do a full immuno-work up on him to see what type of immune response he has. Monday we are going to meet as a group with our doctors, neurology, and infectious disease...not because they think he has an infectious disease, but because they are good at plotting occurrences so that we may be able to find some pattern to the madness. We are just looking for answers right now. To be perfectly honest, we are terrified of the answers we may get. Ignorance may be bliss, but it doesn't help my baby, so we are in search of knowledge.

On a happy note, Gunner is with his Aunt Heather and Uncle Greg. from the pictures they are sending us, he seems to be having a blast!

Max is sick

Max has had a rough few days. Yesterday morning I called in to check on him and they had just re-intubated him, and his heart rate was over 250 and his temp was in the 104 range. Needless to say, Doug and I drove to the hospital in record time. No one knew what was going on with him. His heart rate just sky rocketed and his work of breathing got worse, so his blood gases were terrible and his saturation levels dropped. They started running all sorts of tests.

Today test results have started to come back. His spinal fluid is negative for infection. His blood is positive for a gram positive cocci cluster, yet to be identified, however the guess is Staph of some sort (aureus or epi are the most likely culprits). He has had bloody stool so there is also some sort of bowel infection. He is being treated with two antibiotics, one for blood, one for bowel. He is still intubated, and he is on a cooling blanket to keep his fever down.

Doug and I are staying at the hospital with him. Our fabulous neighbor, Becky, took Gunner for us last night and Doug's brother, Greg, and wife, Heather are going to take him for us tonight and the rest of the weekend. He will get to go swimming, play with his baby cousin Aiden, and Roxie the wonder pup, and he will have a grand ole time.

6/22/11

Max is three months old today!

He is doing well. We have been back in the NICU for a week now, and so thankful. After all the major changes made before, during and after surgery it feels like we are going very very slow now! There isn't much new on a daily basis. Right now he is on all the meeds he will likely go home on. We need to get his lasix dose cut in half of what it is currently, and that is the major goal. He will probably come home on oxygen, which we are fine with...just get him home safely!

We have our fantastic primary nurse Becky back! Mr. Max gave her a hard time today, but I think he is secretly happy to see her. Occupational Therapy (OT) is going to start working on bottle feeds again. Physical Therapy (PT) is going to be working with him as well, laying in a bed for three months sets a kid back! Music Therapy has put an IPod in his bed and he responds well to the music. They are all still very confused by his breath holding spells and random fevers, so they are working with neurology to see if they can control it with medicine at all.

On Monday, Gunner's daycare was closed, so I got to stay home all day with him and we had a fantastic time! We did some shopping, went to the fabric store so that I could make some blankets for the "blankets from the heart" program and Gunner picked out some robot fabric for himself! We went to the pool, and I thought he was going to take off swimming! He was a total champ, not afraid of the water at all. We played outside with bubbles...it was just a great day, way over due!

6/13/11

Max is doing well! Today has been a big day for him. They took out his pacer wires this morning as well as the stables and bandages from his incision. It doesn't look nearly as gruesome as I expected! They also stopped the last of the I.V. heart meds he was on, as well as one of his pain meds. And he is on room air! No nasal cannula, no breathing tube! His face is clear of tubing, and it is so precious! I'll post a picture later.

He is having some pretty serious withdrawals from his pain meds, so they have him on a weaning schedule using Methadone and Adavan. Once they get the withdrawal under control, they will let us start working on bottle feeds again.

The other kids are doing well. We are trying to get them back to a normal schedule. They have been with Doug's parents since Max's surgery. Doug and I left the hospital early yesterday to make it to Makayla's t-ball game! She did great, I think she is going to be a championship ball player when she gets older! We took both Gunner and Makayla out to play putt-putt golf, and then had a picnic lunch. Then Daddy had a baseball game last night.

Gunner was less than thrilled to go to daycare this morning, but he gets over that quickly, his bestie Armani is there to play with. He probably won't want to go home when daddy gets there to pick him up this afternoon.

I'm taking more vacation to be here at the hospital with Max. I'm planning to go back to work on Wednesday, as long as Max is doing as well as he is right now. Right now, it is time for me to hold my baby, so I'll post pics later!

6/10/11

Max had his bronchoscopy today. They noted some swelling in his airway and gave us two choices.
#1 leave him extubated and give him a day or two of I.V. steroids. We have been trying to avoid the systemic steroids because of the muscle enlarging effects they have on his heart.
#2 give him localized steroids injected directly in the airway. He would then have to be re-intubated because the injections would initially cause an increase in the swelling of the airway. Then wait for the swelling to go down and attempt extubation again in a few days.

Doug and I chose #1, with the approval of the cardiologists. we felt that keeping him extubated was his best chance, and since the heart surgery the muscles in his heart have not had to work as hard as previously, so hopefully a few days of steroids won't have an adverse affect on him.

So right now we are sitting and anxiously watching him. He's doing well, the trick is keeping his temper down. We're trying to keep him as drugged up as possible without loosing his drive to breath. So far so good. His saturation levels look good!

We would really like for them to move us back to the NICU, we're currently in the PICU. The atmosphere of the NICU is better, cozier and such. Right now we are both just very frustrated with our doctor, we feel like he is really pushing for Max to get a Trach, which we are adamantly against. In the NICU the doctors and nurses are more familiar with Max, his temper, and Doug and I. We would be more comfortable there, right now I don't want to leave him alone.
But if we can make it through the next few days without having to put a breathing tube back in, we should be in the clear....maybe then we can go back to the NICU until discharge. We have a fabulous primary nurse in the NICU, Becky, and several others that know Max well. I would feel comfortable going back to work in the mornings if he were with them while we were gone.

Update on Max 6/9/11

Max is scheduled to have a bronchoscopy tomorrow.  To date he has had two previous bronchus, both of which helped successfully extubate him, and that is what we are hoping for this time as well.

Back story:  Max was born 3/22/11.  On 3/24/11 he was sent to Children's Mercy Hospital in Kansas City, MO.  There it was discovered that he had two holes in his heart a VSD (ventricular septum deviation) and an ASD (atrial septum deviation).  At the time, neither seemed to be immediately life threatening, and they planned to due surgery to close the holes between 6 months-12 months of age.

He did have trouble breathing due to fluid on his lungs caused by the VSD.  The VSD allowed extra oxygenated blood from his left ventricle to flow to his right ventricle and then into the lungs mixing with the de-oxygenated blood.  They managed this with Lasix, a diuretic drug, and then two other meds, Dijoxin and Captopril to make his heart function more efficiently.  He also had "spells" in which he would hold his breath and turn blue, his O2 saturation would drop along with his heart rate.  These were usually due to agitation, and the nurses learned to just leave him alone and he would usually come back out of it.  Max became famous around the NICU for these little spells!

The big issue keeping us in the NICU was feeding.  He simply didn't have the energy needed to take a full bottle.  We eventually had a g-tube put in place to allow safe feedings at home.  A G-tube is a feeding tube that goes directly to his stomach.  The operation went fine and the G-tube was safely in place, however he failed extubation afterwards.  They had to re-intubate him and tried a round of steroids, again failing extubation.  Eventually the Ear, Nose, and Throat doctors got involved and found granulation tissue, presumably caused by the initial intubation.  They removed this and started him on more steroids, along with some pain meeds which he became addicted too.  They actually had to give him methadone, the drug used for heroine and Meth addicts to deal with his withdrawals, my little junkie!  This worked for a while, and he was able to get the breathing tube out, but only for two weeks or so.  Right about the time they were discussing discharge with us, he had to be intubated again, due to obstructed airways.  This intubation was rather traumatic in that it took 10 tries (yes 10!) to get him intubated.   ENT went back in, found a raw area in his airway and thought that a scab had been knocked loose during the intubation process.  After this he was again put on a longer regimen of steroids and was successfully extubated!  Phew!

During the Bronch they also noted that his trachea curved.  An Angiogram showed that his Aorta was pushing on the trachea, but it didn't cause any compression of the trachea to block the airway.  They decided that at the time of surgery, if it was causing and issue they would move the aorta out of the way. The steroid regime caused problems of it's own.  The muscles of his left ventricle became enlarged due to the steroids, so all the steroids were weaned off.  They also stopped his Dijoxin and Captopril at this time.

Max did well after this, he started gaining weight, was being weaned off his O2, and his pain meeds, and once again they were talking about discharge!  Apparently Max had different plans, that did not include going home.  The very next day he had one of his typical breath holding spells that resulted in him passing out!  Mommy and the Nurse, Emily, nearly had a heart attack!  It was horrible to see your baby turn blue and go limp in your arms.  Cardiology got involved again, the wonderful nurse practitioner Linda, made phone calls from home all weekend.  The Cardiologist, Dr. Drake, did an echo and saw that  the VSD was allowing more blood to his lungs than initially thought, and the muscle in the left side of his ventricle was larger than they thought, causing a blockage to his mitral valve.

They did a heart cath to take measurements and pressures to see how his heart was functioning.  From this, they determined that his heart was pumping 4-9 times more blood than it should be, due to all of the extra blood flowing to his lungs.  The decided to go ahead and fix his heart.  He was intubated for the heart cath, and failed miserable during that extubation.  Since the previous intubation took 10 tries, and I found that ridiculous I had vowed to NEVER leave him for an intubation process.  So when they had to re-intubate him, I was standing right there.  This time it only took 3 tries, but he coded and they had to perform chest compressions and give him epinephrine to get his heart rate up.  I think this took about 5 years off of my lifespan.  But it was decided that rather than putting him through the stress of extubation and intubation again, he would just stay intubated until his surgery

His heart surgery was scheduled on 6/2/11 at noon.  Doug and I arrived at the hospital around 7am to get to spend extra time with him and try to hold him.  Holding him during intubation

But, thankfully God watched over our boy, his surgery was successful, and by 5 that evening we were back with him.  We had wonderful support from our family, Doug's parent's and brothers were here.  One set of my parents were here, and Gunner and Makayla were with us as well.  He did fantastic after his surgery.  Had a few spells of arrhythmia on day 3 post-op, but that was managed with meds and hasn't returned yet.  They performed an echo and said his heart function looked great.  There is still one small VSD, but it is so small it couldn't have been fixed in surgery and they don't anticipate that it would cause him any issues.  They only did a partial close on the ASD, to allow it to act as a "pop off valve" with high pressures, and it looks fine as well.

So now we are on to our next hurtle....the extubation.  ENT is going to take him back into the OR and do another bronch to immediately address any swelling or obstruction.  Hopefully this will be successful and we will be on our way home soon.