UPDATE 8/9 AT 10 AM:
Max had a good night and did not need oxygen. They are going to discharge him from the hospital today. He is on a waiting list to see doctors at the Allergy & Immunology Clinic, though we have a few friends who have connections that are trying to get him in sooner. Please pray that he is able to stay well between now and his doctor’s appointment. We don’t want to end up in the hospital again!
UPDATE 8/8 AT 3:30 PM:
We had visitors last night and I was able to sneak out for a quick dinner with a friend and get out of the hospital for a little while. Max loved having some friends visit him for a couple hours… I’m pretty sure they all sat on the bed playing video games the whole time, but I guess that’s what boys will do when one is stuck in a hospital bed.
He had another albuterol inhaler breathing treatment right before bed around 9:30 pm and ended up coughing up a storm and throwing up his last meal. He had been upset with me for not letting him eat Oreos at 9:15 pm, but I quickly pointed out that they wouldn’t have lasted long if he’d eaten them.
He had a tough time going to sleep again, but managed to keep his oxygen saturation above 90 for almost the entire hour that he laid in bed trying to fall asleep. In the end, he had to put the oxygen tube back on and he was on 1 liter of oxygen for most of the night.
He woke up around 7 am pretty grumpy. The resident doctor came in first thing and let us know that there were no new test results. I’ve been wondering why the blood work is taking SO LONG to get back… apparently many of the tests they are running on him get sent directly to Mayo to be analyzed and each kind of test is only done on certain days. So at least I learned something new!
He has had a normal day today, although he spent most of the morning coughing. The doctors keep assuring me that the coughing is good because it opens up his airways, so I will just have to keep trusting them. It’s difficult, because from my non-doctor, mom perspective, I can’t tell that he is getting better. I mean, it’s obvious that he is requiring less oxygen every day, but he is still coughing like crazy and coughing up lots of mucus.
We are trying to get him in to the Allergy & Immunology Clinic here at CMH when he is discharged, but it seems the earliest they can get him in for an appointment is in 3 weeks. I’m concerned that he may get sick again between now and then and we’ll end up right back here. The doctors have said that is something they are concerned about as well, but that AIC would rather see him in their office and not as an inpatient. So, we’ll see how that goes.
Max is still breathing really fast and shallow. Yesterday, they had him blowing bubbles to help him breathe deeper. Today, he has a fancy spirometer that he has to suck air through to help expand his lungs. He was very tired today and for a bit, it seemed he had a fever coming on. He managed to fight it off without Tylenol.
I convinced him to lay down for a nap around 1:15 pm and of course, just as he was falling asleep, someone came to the door and he was wide awake again. I wasn’t giving in today, as you could see the exhaustion in his eyes. He finally fell back asleep around 2:30 pm and is still sleeping.
Not much other news to share. We will be here tonight for sure. I am guessing two to three more days, but it’s hard to tell at this point. I’m hoping he won’t miss his first day of school next Wednesday.
Also… I need to give a HUGE shout out, hug, and thank you to White House Custom Color (WHCC). They have been our lab of choice for our photography business for seven years and we are so grateful to them. You may have seen that Josh is selling love note cards to help us earn money to pay for Max’s hospital stay. (Our deductible is $12,700 and we are about $8,000 short of that… until we get the bill from Children’s Mercy obviously).
In less than 24 hours, we’ve sold over 120 sets of love cards and WHCC has so graciously offered to print all the cards free of charge so that more of the money we bring in can go toward medical bills. I’m just floored by their kindness and so incredibly grateful to be part of such a loving, generous community.
Cards are still available here –> http://joshsolarlovesyou.com/2014/08/08/people-are-awesome/
UPDATE 8/7 AT 5 PM:
Max has had an uneventful day. The doctors came by this morning and upgraded his diagnosis to “viral pneumonia”. The treatment remains the same… support him with oxygen and albuterol inhaler treatments. He has been off oxygen all day today except when he laid down to take a nap. Within 15 minutes of falling asleep his oxygen saturation dropped below 90 and he had to get the oxygen tube back on. His nap ended rather abruptly at that point, but being the mean mama that I am, I made him continue to rest for another hour.
I anticipate that he will again need oxygen overnight, which means that we will be here for a couple more days at least. His spirits are good and he is keeping entertained by the many books, games, toys, movies, and video games that friends have brought by for him to use. There’s no new news to report other than that. We are remaining hopeful that he will beat this pneumonia soon and be able to go home and that we will get in to see the Allergy & Immunology team quickly before he gets sick again.
UPDATE 8/7 AT 8 AM:
We got a lot of visitors yesterday afternoon and evening and Max was SO happy to see his best friend Ashton. He took a shower shortly before Ashton arrived and did so well off the oxygen that his nurse let him stay off. He did well off the oxygen for FIVE hours, but as soon as he laid down to go to bed, he had to be put back on oxygen. He had a coughing fit and threw up some mucus and his dinner and then he started getting a fever again, so he had more Tylenol.
He had a pretty good night. The respiratory doctor came in at 2:30 am to give him a scheduled albuterol inhaler. He was up coughing for a short time after that, then fell back asleep. We woke up around 7:30 am, he was coughing quite a bit. The resident doctor came in and let us know that several of the viral infections they are testing for came back negative, including Eppstein-Barr Virus.
The doctor listened to his lungs and said he is moving good air but struggling to breathe deep into the bottom of his lungs. He is still breathing quickly. They are considering doing another chest x-ray today. The doctor said he thinks the rhinovirus is causing the mucus, which is building up in his lungs making it hard for him to breathe and also causing the coughing.
Max is in good spirits, though he was disappointed to have to go back on oxygen last night. We are trying to keep busy here at the hospital. He is improving slowly. We were hopeful that he would be well enough to go home today, but as of now, it doesn’t look that way.
UPDATE 8/6 AT 2:40 PM:
Max had a good night last night. He slept all night, but started coughing when he woke up. The respiratory team came in to check on him. He started to get a fever later in the morning and had Tylenol. He also got 6 puffs on an albuterol inhaler. He’s still hooked up to 4 liters of oxygen and looks a little puny today. He is in good spirits.
The doctor came in just a few minutes ago with CF test results. Max’s number was high on the normal side, but because he had a negative sweat test in 2006 and they consider this one to also be negative, the pulmonary team has determined he does not have Cystic Fibrosis. Thank goodness!!
Max will continue to stay in the hospital as long as he requires oxygen. The doctors here are providing support for him while he is fighting off the rhinovirus and enterovirus. After he is released from the hospital, he will see the allergy/immunology team outpatient to look for the cause of his underlying issue. They are unsure at this point if he has an underlying immune system problem, an infection of some sort, or an allergy that was improperly treated. Either way, the doctors have confirmed that he has indeed been suffering from multiple infections on top of the underlying problem. Thanks for your continued prayers!
UPDATE 8/5 AT 9 PM:
After his epic coughing fit and fever this morning, we had an uneventful day. The team of doctors here (about 12 of them!) came around 11 am with an update. No news on blood work, but they opted to not do the ultrasound. They said they wouldn’t be able to get the info they needed from an ultrasound and he needs an MRI. At this age, they recommend sedating for an MRI and they don’t want to do that when he’s having trouble breathing. They will order an MRI through our family doctor once his acute virus is done.
A nurse from the CF clinic came to the room and did the sweat chloride test around 2pm. As of now, we have not gotten results back yet. We are expecting them in the morning.
He has not coughed much throughout the day, but as of now, he is still on 6 liters of oxygen, so they are watching his breathing closely. His lungs sound clear and there are no signs of asthma or allergies. They are concerned that he is breathing at double the normal rate and requiring oxygen, but his lungs sound clear.
They will keep him here at CMH until he can breathe on his own without needing oxygen. I expect more blood tests tomorrow. Thanks for your continued love and prayers.
“I don’t want to spend the night at the hospital,” he said as his eyes started filling up with tears.
“I’ll be right here with you the whole time,” I said. “Someone is finally going to help us.”
And just like that, in a whirlwind of doctors and nurses, Max was admitted into Children’s Mercy Hospital yesterday. I was honestly shocked that they actually admitted him into the hospital, but lucky for me, I chose the exact right moment to take him to the emergency room… he was having trouble getting enough oxygen and I didn’t even know.
He’s been battling a chronic illness for about 18 months now. I know all too well what it’s like to be sick for so long and not know what’s wrong… and to watch Max go through that has been awful. I’ve watched him go from a normal, active, healthy kid to a puny, tired, sick kid who coughs almost constantly.
We’ve tried everything from antibiotics to chiropractic, a tonsillectomy to essential oils, inhalers to allergy meds and everything in between. Some things have helped his symptoms and some things have helped him temporarily… but whatever is wrong with him hasn’t gotten better. I’ve grown weary of hearing the words “well… it must be allergies.”
After this last round of antibiotics, I watched him get sicker with each passing day. Desperate, I called the pediatric clinic at Children’s Mercy and begged for him to see any doctor. They told me there was a two month waiting list and I knew we couldn’t wait any longer. I wasn’t sure what the ER could really do to help, but we went anyway.
I sent out a request for prayers on Facebook and before you know it, we had a team of doctors checking him out and he was admitted here to stay. I’m going to keep this post updated with what’s going on while we’re here at the hospital since I have so many people reaching out wanting updates.
MONDAY: I took him to the ER and they assessed him. His oxygen levels were low, so they immediately put him on oxygen. They put in an IV to take blood and took six tubes of blood to run tests. They did a nose swab and two chest x-rays. Once admitted to the hospital, they did another nose swab.
TUESDAY: He had a rough night last night and only got about five hours of sleep. He had an epic coughing fit and coughed up a ton of mucus. He had a breathing treatment and had to be switched to an oxygen mask instead of the tubes because his oxygen levels were too low again. The respiratory team came to see him three times between 4 am and 8 am. He got a fever and had to take tylenol to help with that.
He is scheduled for an ultrasound of his reproductive system this morning. He had hernia surgery at 18 months old and the report mentions “absent vas deferens”. They are doing the ultrasound to confirm or deny the previous report.
He is scheduled for a sweat chloride test this afternoon which will test for Cystic Fibrosis. He had the sweat test when he had his hernia surgery and the test came back negative, but they will repeat to be sure. We are praying that he does not have CF as it is a serious life-threatening disease. His symptoms are in line with CF, but that does not mean that he has it.
His x-rays came back with no signs of pneumonia or anything really bad. They showed a viral infection which is consistent with blood results that came back late last night showing he has rhinovirus and enterovirus. Both are viruses that typically cause cold symptoms. The doctors have indicated that his symptoms are not consistent with allergies or asthma and that he will be kept in the hospital until he can maintain his oxygen levels without assistance.
We are asking for all the love, prayers, and good vibes you can send out for Max, specifically concerning the Cystic Fibrosis test. And, well, we need to earn some money to pay for the hospital bills that will follow… we are about $8,000 away from hitting our deductible, and I am expecting the bills to be much much higher than that. If you know anyone who might have a need for one of our products or services listed below, we’d be eternally grateful if you would spread the word.
Happy Family Movement Adventure Guides
Happy Family Movement Road Trip Kit
Happy Family Portraits
Wanderlust Watercolors Art
Josh Solar Loves You Love Notes Subscription
Josh Solar Loves You Etsy Shop
Letters From a Friend
Solar Powered Business Tools for Photographers
We’re also selling packs of these cards below. Check out Love Cards for Max for all the info…