From The Mom’s Perspective

Greetings. This month I thought we’d mix up my random ramblings and actually give you a totally different perspective on living with the ball of fuzz. So enter Kim to give you the mothers perspective. It’s the same kid, same battles, but the way we deal with them is often totally different. This is Kim’s story and I hope you enjoy it.

For the past two years, you have heard Dan tell you stories about our trials and tribulations in dealing with our FPIES son, I thought that maybe it was time for me to come out of the woodwork and give you some insight from my perspective.

You hear people telling you that once a child is born, the love you feel for that little person is so immense that you can’t even begin to describe it. Having a chronically ill child makes that love even stronger and as a mom you put your whole life on the line to keep you child alive from day to day.

Those of you close to us will know that the fact that I was able to fall pregnant was in itself a small miracle. Unfortunately, my pregnancy was far from smooth sailing and I spent a lot of it in hospital hooked up to a drip and on a liquid diet. Each gynae visit was a milestone as we had managed to get a week or two further along, there was never a dry eye at each visit, gynae included.

Eventually, my body started to fail and we had to take the little guy out at 34 weeks. Everyone was unsure as to how the little guy had coped during this time, so going in for the Caesar was nerve-wracking for all parties. Dan and I remember waiting to go in to theatre; this head pops round the curtain and introduces herself as the paediatrician; little did we know how much this amazing lady would be involved in our lives over the next few years.

Due to some complications, I spent some time in ICU post birth and didn’t get to bond with my little guy for a while. Poor Dan, he had to run between NICU to see Mitch and ICU to see me, I am sure he lost a few kg’s those first few days!

Surprisingly, our little guy came out fighting and within 10 days we were both discharged and heading home.

Everything was great for six weeks (even though I had no clue what I was doing) until we ended back up in NICU. Mitch’s allergies had started in earnest; little did we know what we were in for. During this time, we were introduced to a paediatric dietician who has also played an amazing role in our lives. Without the paediatrician and the dietician, we would have fallen apart.

We spent the next 6 months or so in and out of NICU with failure to thrive, extreme projectile vomiting, extreme reflux and numerous bacterial infections. We decided to start solid food a bit earlier which we hoped would assist with the reflux, which is when we all realised that there was something a lot more drastic going on. We would feed Mitch food and within 45 minutes, he would be screaming blue murder, vomiting, getting dehydrated and passing out. 

There is nothing scarier than seeing your child in this state whilst you stand by helpless. All you can do is try hold your child with him writhing in pain. At times the screaming would go on for four or five hours.

We had our first official food trial in hospital, whilst Mitch was 8 months old. We started with a watered down chicken broth, 45 minutes later I had a screaming child, 15 minutes after that I had a lifeless child in my arms with nurses rushing in to the room. After this, he was diagnosed with extreme multiple food allergies and we were advised to hold off feeding him food until he was a year old.

After a year, we were advised to try rice cereal; again we experienced the same allergic reaction. It was after this that he was officially diagnosed with FPIES. FPIES in South Africa is not well known at all, fortunately for us the dietician and paediatrician had heard of it. The dietician had just returned from a conference where FPIES was discussed.

As a mom, you jump on to the internet to try and get as much information and research as possible to understand what you are dealing with. The thought that kept running through my mind was “how do I keep this little guy alive?” In The States and Europe there is a big support group but down here in SA, absolutely nothing. We were honestly all on our own trying to figure out what to do.

How do you explain to a person in a conversation that you child is allergic to food, in its entirety!

Protective mom took over and I started challenging anyone who tried to tell us otherwise, including medical professionals who knew nothing of the illness or our child.

At 9 months old, Mitch and I spent nearly four weeks in hospital, with severe bacterial infections and failure to thrive. Mitch had a Naso Gastric (NG) tube in his nose to try feed him directly in to his stomach, but he was still unable to keep anything down. He then had to have a Naso Jejunal (NJ) tune inserted which goes directly in to the intestines. This tube had to be inserted under x-ray / ultra sound without any sedation. Holding your child down, whilst he screams in pain is nothing a parent wishes to repeat. Unfortunately we had to repeat this several times. During this time, the paediatrician consulted with a couple of surgeons to perform a surgery to stop him from vomiting.

The surgeon operating in private practice repeatedly stated that Mitch was not an ideal candidate as he was not failure to thrive. When a baby only weights 7kgs and he loses 1 kg in a week, says to me that we have a problem!

Mitch went home with the NJ tube hooked up to a feeding pump for 18 hours a day, upon the surgeons request. We had to hire a drip stand to walk around the house with him as he was starting to move about. Everyone continued to ask and still do “how do we do it”, the only answer I gave and still give is, “you just do”. You don’t have an option and you will do whatever you can to keep your child alive. Mitch ended up being a bubble child as he could not socialise with anyone due to the risk of infections and the fact that he was unvaccinated, he is allaergic to the vaccinations. Transporting him around with the machine was a bit challenging. We lived like this for 2 months or so.

It was during this time that I was accused of deliberately not feeding my child and the paediatrician was accused of mismanaging the case. I will leave it at that….. but any mom out there knows that feeding a child is challenging and you do everything you can to get your child to eat. So making that accusation was like stabbing me in the chest. It was at that stage that the bond between the paediatrician and I became a lot stronger.

Eventually, the paediatrician managed to get the surgeon to perform this life changing surgery which would stop Mitch from vomiting. The surgery reconfigures the valves going in to the stomach. Mitch spent a lot of time in hospital after this operation due to complications and the fact that he refused to drink from a bottle. We eventually had to go home with an NG tube with instructions to change the tube every 4-5 days. I was taught how to pass the tube through Mitch’s nose and down in to his stomach. I had to test afterwards if it was in the stomach and not the lungs. Mitch was a lot bigger and stronger and knew what we were up to. Dan would hold a screaming Mitch down whilst I tried to put the tube in. Not for sissies!

Unfortunately Mitch spent more time in hospital in the 2015 year than he did at home due to repeated bacterial infections. It is during these times that you realise how special the nurses are. The bonds I have developed with the nurses at Kingsbury Hospital are amazing. The nurses even bought Mitch his first plastic motorbike and pyjamas!

Due to Mitch having a feeding/bottle aversion, we eventually had to get a port/peg installed directly in to his stomach in order to feed him medicated formula via the feeding machine.

During the 2015 year, Mitch had 8 surgeries. 8 times I had to take the little guy in to the operating theatre and hold him tight whilst he fought against the gas mask putting him to sleep. 8 times I kissed him on the cheek, hoping all would be ok.  The anaesthetists even became friends, with tears in their eyes they promised to look after him each time.

Mitch’s body eventually rejected the feeding port and this had to be removed at the end of 2015, but I can honestly say that in the 6 months of having the port, Mitch gained in strength.

The start to 2016 wasn’t great with Mitch being back in hospital with a nasty virus. Unfortunately, Mitch no longer had veins to work with and even if we managed to get a vein, it would collapse within hours. We had to get a Central Line installed directly in to a vein in Mitch’s neck. The medical community was once again so amazing during this time. Mitch was admitted over a weekend, the anaesthetist on call was not a paediatric specialist and we had to scramble to try find someone who was willing to install the line ASAP. The anaesthetist, who agreed to do the procedure, knew about Mitch and agreed to come from Langebaan where he was on holiday with his family, to do the surgery! It still amazes me, how the team around us goes the extra mile. 

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Mitch has thrived over the past few months, we have managed to introduce a few more foods, we are now up to 6 safe foods supplementing with the medicated formula.

Every few months I fight with our medical aid to motivate for them to pay for the medicated formula. Mitch has his own account manager and doctor who every three months have to take his case to the medical review board. This is such a stressful time as I get grilled by the doctor on what we are doing. I always feel that we are not doing enough but she does not know what we go through on a daily basis. I cannot understand the medical aid logic, the formula is what is keeping Mitch alive and yet they still question the payment of it.

Parents of chronically ill children go through huge physical, emotional and financial strain to keep their children alive.  During hospital stays, relationships are put under huge strain, as all you can think about is your child, your spouse comes second.

All I ask is for you not to judge us or anyone else with a special needs child, you have no idea what we go through on a daily basis and at times it is really tough just to get out of bed, after another sleepless night and put one foot in front of the other……. but somehow we do.

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