A trip to the ER

We returned to LPCH a little sooner than expected. Max was discharged from the NICU yesterday around 2:30PM. He seemed a little tired and congested but those things were somewhat expected after being intubated and sedated for his heart cath 24 hours prior. We brought him back to the hotel where he progressively got fussier. Brad and I thought he was just constipated because he seemed uncomfortable and after 5PM refused to take a bottle. I went to CVS around 8PM to grab some tylenol and prune juice. By the time I got back to the hotel Max just didn't seem to be himself. He was very fussy and we couldn't calm him. I noticed he was breathing really heavy but I initially thought it was just from crying so hard. Then Max started having serious chest retractions, began bobbing his head, and every couple of breaths was gasping for air. We knew this was not normal and made the decision to take him to the ER.

Stanford ER is a very crazy place. There are metal detectors, security, and police everywhere. I barely gave the front desk Max's name when a nurse took one look at Max and alerted the pediatric staff that there was a baby not breathing well. I'm sure their sense of alarm was heightened because Max was already on a constant flow of oxygen and was still having trouble breathing. Within minutes a whole team of doctors and nurses were in his room. They turned up his oxygen to 4 L/min (he is normally at 0.5L/min) and started talking about reintubating him. The Respiratory therapist started suctioning his mouth and nose but didn't clear much. He then took a closer look way up his nasal passageway and saw impacted boogers. He began suctioning very aggressively for several minutes with lots of saline. The amount of stuff that came out of Max's nose was very impressive. As soon as the RT was done suctioning, Max opened his eyes and looked at us an smiled. His breathing quickly returned to normal and within minutes he was back to our normal baby. After an x-ray, some blood work, and a few attempts at an IV, Max was transferred back up to the NICU for observation.

Max was discharged again today and is finally back to our normal baby. He is eating normally, breathing normally, and sleeping normally. The doctors think because Max had been on the portable oxygen machine without humidification for so long (because we have been traveling) that it dried everything up. The dried boogers literally occluded his nasal airway which quickly became a big problem because babies breathe through their nose. We still can't believe that the whole scary experience was from boogers but he was in serious respiratory distress. Now we just need to love on Max and keep him healthy until the big day on Thursday!

A plan and a date!

Sorry for not updating sooner, yesterday was a really long day. Max was scheduled for his heart cath at 10:30AM. We arrived at the hospital at 9AM and for various reasons (long first case and Dr. Perry being called into an emergency), the team did not take Max back into the cath lab until 1PM. Considering he had his last bottle at 5:30AM, waiting in pre op for four hours was fun! I've never seen Max suck so hard on a pacifier. Max doesn't even like pacifiers but he sucked so hard on that stupid thing hoping that if he sucked hard enough maybe some milk would come out! As of Wednesday, the plan was to get some data from the cath and then perform an atrial septostomy again to increase Max's red and blue blood mixing. Right before the procedure Dr. Hanley (Max's surgeon) advised the cath team not to proceed with the septostomy. Brad and I quickly inferred that if they were not doing the septostomy that his surgery was imminent. We received a call about an hour and a half later that Max's cath was successful and they had gathered all the data they needed. The cath data confirmed that Max had grown into the pulmonary band and that because he is now such a chubster that the band is now too tight. The tight band decreases blood flow to Max's lungs which results in lower oxygen levels. Dr. Hanley and Dr. Perry discussed the results and the decision was made that with the great pictures from the ECHO and the data from the cath lab, Max did not need the MRI. Max was successfully extubated in the cath lab and was transferred to the NICU. Brad and I love the NICU. We know there are really sick kids in the NICU but the vibe is so different than the CVICU. The nurses are amazing, nurturing, and loving. Max is so lucky to have them. We got to catch up with some of our favorite nurses (we missed you Krista) and show them all how cute and chubby our Mighty Max has gotten.

We love Roberta!

During rounds this morning we were informed by Dr. Sachs (Max's main cardiology intensivist at Stanford) that Max is scheduled for his full biventricular repair on Thursday August 4th. Because of Max's low oxygen levels and need for home oxygen, Dr. Hanley bumped another patient and put Max in his surgical schedule for next week. Brad and I have mixed emotions. We are excited that we made it to this point and that god willing this will be Max's last surgery. We are also scared to death of what is to come. This should be 8-9 hour open heart surgery and we already know how terrifying the recovery is from heart surgery. The CVICU is such a scary place and our anxiety runs high whenever we walk in that place. We know Max will receive amazing care there from the doctors and nurses but it is just heartbreaking to see your baby in that place. We have no idea how long his recovery will be but we hope to be home by the end of August/beginning of September.

Sleepy baby 

Max's recovery from the cath went really smoothly and he was discharged today! Our plan is to stay close to the hospital over the next few days. We hope to lay low and keep Max healthy until the big day on Thursday. Please keep Max in your prayers. Please pray that Max's repair is successful. Please pray that Max's recovery goes as smoothly as possible. Please pray that Brad and I have the strength to get through the ups and downs of the next few weeks. Max is truly our little warrior and we look forward to the day when his broken heart is fixed!

And we are out of LPCH at least for a few days!

Back to Stanford

Unfortunately we are headed back up to Stanford a little sooner than expected. This last Tuesday I took Max to his two month wellness check with his new pediatrician, and when the doctor measured his oxygen saturations they were in the 60s. The low oxygen levels were not totally unexpected as Max's saturations seemed to be dropping little by little every cardiology visit. I immediately called Dr. Doshi (Max's cardiologist) and she then contacted Stanford. We wanted Stanford to know exactly what was going on before their big heart conference every Wednesday morning. At this weekly conference surgeons, cardiology intensivists, and pediatric cardiologists present different patients and then make surgical plans as a team. After discussing Max, the joint  decision was made for us to head back up to Stanford this week to get more information.  On Thursday, Max is scheduled for a sedated MRI in order to obtain a 3-D image of his heart and specifically his VSD (hole in his heart with the strange attachments of the mitral valve). From the MRI his anesthesiology team will take him straight to the cath lab where they will collect as much data as possible about what is going on with Max's heart. They suspect that Max is probably just streaming blue blood out his aorta but the cath will tell them for sure. Depending on what information is collected during the cath, the doctors may perform another balloon procedure to reopen his ASD to produce more mixing of his red and blue blood. We are hoping to just be in the hospital a few days but we have learned from previous experience that we could be there awhile. If the cath improves Max's oxygen levels they will probably send us home to let him grow some more. If the cath doesn't improve Max's oxygen saturations, then it all depends on how the VSD looks in 3-D.  Dr. Hanley may decide to go ahead and do his full repair even though Max isn't as big as he originally wanted or he may decide to keep Max close by at the Ronald McDonald house on home oxygen and just let him grow until he feels it is safe to do Max's full repair.

We currently have Max on home oxygen 24 hours per day. It has been really stressful to play nurse: measuring his levels and adjusting his flow accordingly, but we are slowly getting used to it. Although we are completely home bound, the good news is that Max seems to have a lot more energy since starting the oxygen. We have gotten more smiles and coos in the last three days on oxygen than the whole previous week combined.

There is never a dull moment in our house these days. Between the monitors and the joys of three kids it can be overwhelming. But we know all too soon that our family will be split up again so we are just trying to embrace the craziness. Please keep mighty max in your  prayers. Please pray that we arrive at LPCH safely. Please pray that the procedures are performed without complication and that doctors get the answers they are looking for. I will keep the updates coming and will try to update everyone late Thursday/Friday with more information.

Love my big brother and sister

happy baby

Showing everyone how strong I am

Second Opinion

We have finally heard back from the surgeons at Boston Children's regarding Max's surgical plan. Yesterday Dr. Doshi (our cardiologist from CHOC) called me and spoke to me for almost an hour trying to explain everything and to make a plan. Ever since Stanford started mentioning a shunt surgical procedure I have been on a mission to find another option. If Max's oxygen saturations drop too low before he is big enough for Dr. Hanley at Stanford to do his full repair, there was talk of performing a shunt procedure which in my eyes would permanently damage a perfectly good blood vessel and would greatly reduce Max's long term survival chances. There was also talk of possibly doing another PA band surgery to loosen the band as he grows which in our minds is another surgery that isn't accomplishing much. The good news is we have a plan B from Boston if it comes to down to that. Dr Emani from Boston said when Max's oxygen levels drop too low that they would perform his complete repair in two stages. They would first perform the arterial switch portion of his surgery (switching the position of the aorta and the pulmonary artery),regardless of his size and that would buy them some more time. Then they would wait as long as Max's heart will let them before they try to close his very large and complicated VSD (Ventricular Septal Defect). Unlike Dr. Hanley, Dr. Emani doesn't believe the mitral valve will be compromised during the surgery but he does want Max to be bigger to have as much room as possibly to work internal to his heart to repair the giant hole.

After a long discussion with Dr. Doshi our plan going forward is to keep monitoring Max's oxygen levels on a biweekly basis. As soon as Max's saturations drop (Dr. Doshi thinks some time in the next two to three months) he will be admitted to CHOC for a cath procedure where they will reopen his ASD with a stent. During this hospitalization they will also do an MRI of Max's heart. Both surgical teams (Boston and Stanford) want to see an MRI so they can have a better idea what Max's VSD looks like in three dimension. After the MRI and knowing how big Max is at that time, both surgical teams should be able to give us a more definitive surgical plan.

Boston is an amazing place and ranked number one in the country for cardiology, but taking Max on a six hour cross country flight has its own risk. More than likely if we end up going to Boston he will need be life flighted on a medical flight so his oxygen levels can be monitored more closely. At this point in time there a lot of unknowns. How long until Max's oxygen saturations drop? How much extra time the cath procedure will give us? What information the MRI will give the surgeons? Which surgical center is best for Max? How many and which surgeries he will he need? 

Dr. Doshi will help us facilitate and determine what is best for Max long term. We are very lucky to have a doctor who takes the time to consult with these surgeons, takes the time to explain things to us, and happily puts politics aside and just wants what is best for our kid! 

Yay for baby rolls

Many of you have been checking in and wanting Max updates. I guess sometimes no news is good news. In the hospital things would change hour to hour and now we are just enjoying our "boring and quiet" life at home.

Max has been doing really well. The little guy has been taking bottles like a champ and there has been absolutely no need for an NG feeding tube. I have been fortifying his milk to 28 calories. Breast milk is 20 calories per ounce so I add an extra 8 calories of formula to increase his caloric intake because his heart has to work so hard. The good news is our little guy is actually starting to get a double chin and some yummy baby rolls! Last doctors appointment he was up to 10lbs 11oz. For a heart baby this is a great weight gain. We are hoping he stays on this trajectory because the faster he gets to 22 lbs the better!

Our happy and chubby baby boy!

We have been seeing Dr. Doshi at CHOC on a weekly basis and now biweekly. Things have been relatively stable in terms of Max's heart. Each visit he gets an ECHO, EKG, pulse ox, etc. The last couple of visits Max's oxygen saturations have been in the 70's. Most people have oxygen saturations of 100, most kids like Max are in the 80's (hearts kids that mix red and blue blood). From what doctors have told us it is ok for Max to hang out in the 70s but not any lower. The way Dr. Sacks from Stanford explained it to me is that although Max has hypoxia (low oxygen levels), he will not become hypoxic (tissue damage from low oxygen levels) unless he drops into the 60's. Dr. Doshi thinks part of the cause of the lower sats in the last few weeks is the ASD (Atrial Septal Defect) that was created during the cath procedure at LPCH is starting to close. One option we have if the sats drop dangerously low is another catheterization procedure to open the ASD with a stent, but hopefully this time it will be performed at CHOC. Our short term goal is to keep Max stable with adequate oxygen saturations over the next year until he is big enough for his full repair. We are still waiting to hear back from the cardiothoracic surgeons at Boston Childrens (Harvard). I would like to have a surgical plan B if we get into a situation with low oxygen sats (even after interventions) before he reaches Dr. Hanley's magical 22 lbs. 

Although each cardiology appointment is filled with a lot of anxiety, our day to day life is really normal... or as normal as life can be with three kids! Next week Brad heads back to work and I will really be on zone defense (three kids on one adult). Max seems to be a totally normal 7 week old. He is still waking up twice in the middle of the night to eat. He loves to be held and rocked to sleep. He smiles and giggles when his brother and sister pay any attention to him. 

Big brother and sister - the best medicine!

Last week Max had his evaluation from the regional center. At this point in time Max has not showed any signs of delays. The plan is for Max to receive in home early intervention therapies before he gets a chance to become delayed. Many heart kids like Max end up behind with gross motor activities because their little hearts just get tired. I tell Brad all the time that "my full time job" over the next year is to leave no stone unturned when it comes to Max's health. And don't worry when I'm not fighting for Max, I will still be checking eyeballs!

Thank you to everyone who has reached out to our family, sent gifts and cards, brought over meals, and sent restaurant gift cards so I don't have to cook (shout out to my MOPS moms!). Please continue to keep mighty max in your prayers.

Sincerely,

Kara and Brad (two very tired parents)