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Everybody in the hospital played it off as if it was something minor, like a heart murmur, so that I wouldn't worry, until two hours later it got worse. Max started to get really fussy and the murmur was something the pediatrician grew very concerned about. Two hours after that, a neonatologist arrived at my bedside. She was explaining to me that my son Max had a congenital heart defect that needed immediate attention and that the hospital that I was in was not equipped to handle him.
The thought that ran through my mind was "My baby is going and I can't go!" My heart felt crushed, my mind was going everywhere, what is going on? I didn't want them to take him without me seeing him once again. The nurses at the hospital where I was at were so nice, they had printed up information on my sons heart condition—HLHS.
As I read, I got scared and felt alone. All I could do was cry and pray that my son would be ok, that this was all a mistake. Meanwhile my husband went with Max to Children's in Chicago. It was there he learned the severity of Max's condition. He didn't expect to see Max on a ventilator and have IV's in his head. He talked to Max explaining why he was in a different hospital than mommy, and told him that everything would be ok.
Meanwhile I was trying to get out of the hospital, but they had their rules about being release after a c-section. Long story short, I was released 48 hours after giving birth, and that was only because they were going to do Max's surgery that day. When I finally got to Children's, I was a nervous wreck. I was afraid to hold him or even touch him. He looked so fragile, so weak, and so different from when I last saw him. I could do nothing but cry and wonder what I had done wrong. I wanted to spend more time with Max before surgery due to the new facts I've learned on what his chances were. They postponed the surgery that day so I could spend at least a day holding him, I was scared and confused on what was going on.
Max finally went into surgery at three days old. He had the Norwood done with the Sano modification with the B-T shunt. We were told that he lasted 5 minutes off of the bypass and his heart stopped, so they had put him back on. He was on it again for 15 minutes and once again his heart stopped. Every time the nurse came out and told us what was going on, I just wanted to die, knowing that he is having such a difficult time because of something I thought I might have done. I have a difficult time understanding that this just happens to children with no rhyme or reason. I took great care of myself being pregnant and even took my prenatal vitamins with this pregnancy to the end.
The nurse came back out—she now told us that Max has been off of the bypass machine now for an hour and was showing some progress, only because Dr. Mavrodouis and Dr. Backer decided to go back into his heart and found out that his aorta was 2 mm off. Thank God for these medical professionals for their patience and understanding.
Max was in the PICU when we finally got to see him. It was absolutely wonderful to see him again even with all the tubes and IV's. I was just so happy to see my little boy laying there so peaceful and alive. Seeing his chest go up and down knowing he's breathing and that his heart is working, granted he was on the ventilator but it was still his heart that was beating on the monitors. Max had echocardiograms done quite often to see if there was any improvement. There was none but he was holding his own, they had lowered his medication slowly and were looking at his responsiveness. The last echo they did showed a coarctation of the aorta, right at the arch. They wanted to make sure so they did a CT scan—it was true. Max had to go through another procedure called a cardiac catheterization which itself had risks. I was worried but I was assured by all the doctors that this was a routine thing for them. My husband was convinced that it was a walk in the park. Well it went great, until 48 hours later, his legs and arms got really cold, he wasn't as active. I had asked what had happened? The answer I got was "I don't know. This normally works but it seems that he didn't like what we did." I then asked "What are we going to do to fix it?" they had said that "There was nothing left to do." My heart sunk and I thought how could they give me such a false sense of security. Days went by, I prayed and hoped for a miracle, I asked God to give me my child every day, and with every day came hope. Max once again open his eyes and looked at me, I played with his hands and feet, a gave him his baths and read to him. It has been 2 months since Max was admitted to the hospital and things seem to be moving in the right direction, and although there still was no cardiac improvement, we were happy that there wasn't a decrease. They finally let us go home.
We were home but made our weekly visits to Children's for his checkups and echocardiograms. It was a few weeks later that Max had an episode at the clinical visit that got him re-admitted. I thought it might of been that he had a cold. They ran their test and came back with nothing. They wanted to know why he was throwing up 50% of the time so they did a PH probe and a swallow study. This confirmed that he was aspirating but showed no reaction, and that was something to be concerned about—he didn't cough he didn't gag, he just kept swallowing. So now we are back to just NG feeds. We are now transferred to the fifth floor at Children's because they said that he was no longer critical. I stayed with him every day, leaving my husband to tend to the other kids. I just felt something else was going on.
Max's oxygen saturation was dropping and he became very fussy; he never really gets fussy unless something is wrong. Long story short, his breathing was getting worse and now his cries were ear piercing, something I've never heard before. I knew there was something seriously wrong so I called my husband to come down. As he was on his way, Max coded. All I can see were all these people in his room watching him. He wasn't responding to me anymore he just kept breathing in and now he was turning this dark pink. They had me leave the room for a phone call at the nurses station, as I turned to see who was on the phone thinking it was my husband, I saw them wheel Max out of the room into the elevator with security everywhere. I managed to squeeze through and see Max, I was not prepared to see him in that state. He was blue. I lost my balance and fell to the floor in the elevator. They were frantically trying to get him back into the PICU. As they entered the ICU Dr. Pophul and Chaplin Don stopped me from going in through the doors. They said that they needed to get Max stable and situated before I could come in to see him. I thought this was it. God has given me this beautiful baby and he is now taking it away. All I could do was cry and scream. I had a hard time believing that this was happening.
Meanwhile Dr. Pophul has walked back in and assisted with stabilizing Max. He later came out and updated me on Max's current condition. He told me that they had tried 4 times to get a line in to get him some medication. They were forced to do an I.O. (this is where they take a real sharp IV and stab him in the leg to where it is in the bone marrow.) which is a last resort to administer medication. Max once again is back on the ventilator. When I finally got to see him my husband had just arrived to the hospital, he didn't know what had happened to Max, so Dr. Pophul put us both in a quite room and he had started to explain what was happening.
Max wasn't as blue as the last time I had seen him, but once again my baby was breathing and the monitors showed that his heart was beating. They decided to do another echo, and this time there was a decrease in his function. Dr. Wax and Dr. Pophul were forced to do another cath to balloon the aorta, but this time they would have to stent it. This was the first for all of them. They have never performed a stent in the arch before especially on a baby this size. Well needless to say I had put my faith into God and these medical professionals.
Well it has gone really well so far and I've done nothing but think of going home with Max. He's been tolerating his feeds, but has had this on going thing with fevers, they are puzzled and don't exactly know why this is happening, but he is tolerating it really well. My goal was to get him home for Thanksgiving, and that didn't happen, Max started to lose weight, so they said I was lucky if he came home for Christmas. Well Christmas was getting close and all they did was talk about it. Finally there was a care conference, where all the medical professionals from the surgeons to the ICU team meet in one room and discuss what goals need to be met.
We accomplished all the goals, and we were ready to take Max home under certain conditions that made everybody comfortable. We have a nurse come everyday for 2 weeks then 3 times a week after that and we did our clinical visit every week. I know that it is a lot of running around but at least I have him home now.
Max is now 13 lbs 11 oz and 26 inches tall. He is NG fed only and a therapist sees him once a week. He is a happy baby again. He loves to play peek a boo and loves to talk. Our next cardiologist appointment is on Feb 18th and that's for another ECHO. Meanwhile I'm going to enjoy every raspberry he gives me.
