Now that I have told you about Liam's surgeries, we will begin the journey of his recovery. It was a very rocky road!
On Saturday, November 2 another attempt was made to extubate Liam. Again, I could tell within a few hours that it was not going to be successful. He lasted about five hours and anesthesiology was called to reintubate to him. Then, later that evening when I went to the neonatal unit to use the breast pump, my mother and her husband came racing down to where I was to tell me that Liam was turning blue. I ran back to the ICU and the staff had remedied the situation. They werenít sure if it was a mucus plug , vegal or bronchial spasms. Scared me to death. Later that night he seemed stable so we went back to our hotel (directly across the street) for the first time in days. This was around 2 am Sunday morning. Around 6:45 am we called to talk to our nurse before the shift change at 7. They told us she was busy. So, we hung up and began to dress. Minutes later the phone rang, it was one of the nurses telling us that Liam was in a cardiac arrest and we should come right away. I was sick, numb and in shock. We ran as fast as we could across the street. They wouldnít let us in so we waited outside the door, trembling with fear. Finally, the charge nurse came out to tell us that he was okay. They had given him 3 shots of epinephrin and performed CPR. He was back!
As the week progressed Liamís condition continued to worsen. We called in a pulmonologist on Tuesday, Nov. 5th. The first thing he said upon examining the baby was that Liam had some terrible infections. Fighting those should be first priority. Liamís legs were all mottled. He had three infections - thrush, an infection from the ventilator tube and the worst - one in his blood. An infectious diseases team was called in and heavy duty antibiotics were started. They told us that if he didnít respond to the antibiotics there were no others to try - these were the big guns. Each day we prayed his blood work would show improvement - his white cell count was around 30,000. He had had so many incisions from the surgery, chest tubes and numerous cut downs in both groin areas. Thereís no telling where the blood infection had come from. Every vein in his little body was blown. At this time a pain management team (all anesthesiologists) was also called in. Liam had been on Fentanyl (sp?) and Versed for so long. They are so highly addictive - the team switched him to Methadone and Ativan. They began monitoring everything he was being given, when and how much. This was a wonderful group of doctors that became very endeared to us. They were so receptive to our concerns and questions. We had several friends donate blood and platelets for Liam. Initially they told us to get one unit. He ended up receiving 5 units, the transfusions seemed to help. The platelets were not used.
During the course of all this, echos and ultrasounds were being done. Fluid had once again built up in Liamís pericardium. On Friday, Nov. 8th our cardiologist, Dr. Ferry, did an aspiration of the pericardium and removed 100 cc of fluid. Further echos showed the fluid was still gathering. So, on Sunday, Nov. 10th Dr. Ferry inserted a cath drain. Another 100 cc was removed and within the next two hours an additional 150 cc drained! Incredible - no wonder the little guy was having so many problems! The drain was left in for several days until there was no more drainage.
Slowly Liamís white cell count began dropping - the antibiotics were working! Now, finally, there was some light at the end of the tunnel. We forced ourselves to stay guarded, for every time we got our hopes up something else seemed to happen. The third attempt at extubation took place on Thursday, Nov. 14th and thankfully was a success! It was touch and go for about 48 hours whether he could do it - respirations and blood gases were borderline but the little guy did it! He is truly a fighter!
Now we were faced with trying to get him nourished. I fed him breast milk in a bottle and tried to nurse him some but he was too weak. On Tuesday, Nov. 19th he was finally stable enough to be moved down to the Pediatric floor. We were in the cardiothoracic ICU one day shy of four weeks. Each day I had dreamed of Liamís "graduation" from the unit. By now he was alert and actually smiling! Someone who we were going to definitely miss would be Dr. Laksí Chief Resident - Dr. Abbas Ardehali . He was WONDERFUL! A kind, compassionate and gifted man, and an incredible communicator. We would periodically have meetings with all the doctors gathered which he would help orchestrate. Bill and I felt it was vital that there was a consensus among them as to the game plan for Liamís recovery. Sometimes the left hand doesnít know what the right hand is doing. In a teaching hospital there are so very many people involved and at times we were unhappy with the communication. We were very vocal and active with Liamís care. At times I wondered if they thought we were the "parents from hell"! Dr. Ardehali said we definitely won the award for parents spending the most time in ICU and he assured us that if it were his child he would be just as vocal.
Anyway, the next trauma took place within an hour or so of Liam being moved to the Peds floor. I had gone back up to the ICU to retrieve some frozen breast milk and they overdosed Liam! They gave him Methadone and Ativan at the same time! Amazing, especially considering pain management had a chart written out with all of Liamís medications - when and how much was to be given. At first I didnít know they had done this. Doctors kept coming in to his room and asking me how the feeding was going. I kept telling them I couldnít get him to stay awake long enough to eat and that I thought he was oversedated. Well, within 4 hours or so his respiration dropped to 8 and his saturation was in the 40ís! The nurse that had just come on duty coded him. About 15 doctors raced into his room and he was moved to the Peds ICU.
The anesthesiologist in charge of pain management for that week, Dr. Hill, was wonderful. He had been Liamís doctor for the first surgery. He dug to the bottom of the problem and found that the day shift nurse had given Liam both drugs at once. Dr. Hill administered some Narcan(sp?) and I spent the rest of the night staring at Liam and praying for his stats to return to a safe level. To think that earlier in the day he had been a alert, happy baby and seemingly out of the woods. Once again he was fighting for his life. To say I was upset is putting it mildly. I pulled a couple of doctors aside and told them that I wanted a list of every medication Liam was being given, how much and when it should be administered! From hence forward I monitored and often administered the medicines myself.
Another IV had to be started and there was literally no place to put it. So this last IV went into his scalp. I was very depressed. The next morning he was much better and was moved to Peds Observation. There are four babies in the room with two nurses - one of which is there at all times. Needless to say his appetite was not good so an NG feeding tube had to be inserted. He stayed in Obs until Sunday, Nov. 24th and we then moved to a private room. We were so relieved to be in a private room for I could sleep in there with Liam. I must admit that first night I was a nervous wreck without a nurse right there, so I had my husband stay as well. We both ended up staying in Liamís room until his release.
On Wednesday, November 27th, five weeks to the day since he was admitted, Liam was released. Alleluia! He was sent home with the NG tube as well as numerous medications. I was given a weaning schedule for the methadone. A Kangaroo pump was delivered to the house so I could put him on a continuous drip feed at night. What he wasnít taking by bottle at each feeding, I would gavage the rest.
It was great to be home! I hadnít been home the entire time but Bill occasionally went by the house to get mail and check on things. Our wonderful neighbors took care of the house and our animals. When we arrived home they had put a red carpet up to the front door and a big sign that said "Welcome Home Braveheart - Liam the Conquerer!". We were home for maybe four hours when I saw blood and pus rising out of Liamís right ear canal. I was in a panic! It was 10 at night and we ended up taking him to the after hours childrenís emergency clinic at the hospital down the street. Out of probably 20 doctors looking at Liam at UCLA, noone thought to look in his ears. The doctor at the ER cleaned out his ear and prescribed an antibiotic which we got at an all night pharmacy. Never a dull moment! Here was another infection he had picked up in the hospital. I guess thatís the down side of being hospitalized for so long, you can catch many things while youíre there. Iíve heard that more people die from infections contracted in the hospital than for the malady that they are admitted for.
Our insurance has been incredible. At first, we had nurses come almost every day to the house to check on Liam, then it was reduced to once a week. They paid for respite care 3 days a week, 4 hours each time,for 7 months! They even bought me a baby scale so that I may weigh Liam each day. We also had a physical therapist and an occupational therapist come to the house.
Liam pulled out the feeding tube twice! The second time was December 16th and this time it stayed out! He refused adamantly to breastfeed since returning home so I continued to pump for several months then slowly switched him to formula and baby food. They had us concentrating the formula so that Liam received 28 Ĺ calories per ounce instead of the usual 20. He was weaned off of the Methadone as well as the Phenobarbitol at home.
Liam is a beautiful and very happy child despite all he has been through. It is truly amazing. What a gift he is! Bill and I have done extremely well throughout all of this stress. What a wonderful husband I have. Friends and family were very supportive. I think we all have a new appreciation for life. I think most of us take our childrenís health for granted. Now I have learned to appreciate each day that I have with my Liam!