I have considered for a while now that I needed to write about how this happened and how I, as the mother and primary care-giver has had to learn to adapt or get left in the dust of doubt and all the other many insecurities that I have had about this whole situation.

Well to get right into it, back in March we (my husband and I) went down to salt lake city to the Children’s hospital there to have an elective surgery preformed on our youngest son, Rhonin; who was just then 18 months old and 21 pounds. We went there to do a tonsillectomy and adenoidectomy which is just some fancy words for taking out of his adenoids and tonsils. An overnight stay at most because of his age not anything else. While doing the surgery they called and asked if he could also do a laryngoscopy, a scope of the back of his throat and down into his trachea. We said yes and during this they learned that my little Rhonin has the airway size of a 32 week pre-mature baby. To give us an even better understanding of the size he showed us a coffee stirrer, “This small” his Doctor said lifting the straw. As my eyes latched on to that little coffee stirrer my heart sank and I knew that we were in for a world of trouble. It was at that time that the Doctor recommended that we think about doing reconstructive surgery at some point in Rhonin’s early years. Besides having a small airway he also has a skeletal disorder called Skeletal Dysplasia, which is dwarfism at its core. So my Rhonin will never be super tall.

I was then told that I could go see my little man, my husband Jarod staying in the waiting room with our eldest son Liam. I walked into the PACU and got tense because there was quite I few kids crying as they awoken from surgery. I rounded the bend and saw that Rhonin too, was one of the many children crying. His voice was very rough sounding and by the time they gave him to me he was so worked up that I don’t think he even noticed that I was the one holding him. I silently let my tears of utter despair slide down my face as I tried so hard to not let my emotions come though. I have read somewhere that children, like dogs and horses can sense fear or upset. So I was trying to calm him and not let on that I too was crying. And sadly, he couldn’t even open his eyes and see that it was me…his eyes were too swollen to open.

To make a very long part of the story short, he started having trouble breathing and the doctors were getting worried that he was working so very hard just to breathe. Now I am very much a hands on mom, and I wasn’t going to let anyone do anything to my Rhonin without clear understanding why and if there was any other way. But I learned that sometimes…And I mean sometimes, we need go with what the professionals suggest.

Towards midnight Rhonin was rushed to the OR again. At this time the Doctors wanted to re intubated him and put him on a ventilator to give his poor little body a break from working so very hard. Seeing him struggle like that was so hard. Something that all of us take of granted sometimes. Rhonin returned to sedation and intubated for a week, the swelling went down a little once and they tried to get the tube out only to have to put it back in again. Did you know that even sedated, children can cry. How scared he much have been, and all I could do was hold his hand and kiss his foot, telling him that everything was going to be alright in the end. It broke my heart seeing him cry the first time and every time there after.

It was at that time that his Doctor recommended that we really needed to start preparing ourselves for the possibility that Rhonin would need a Tracheostomy to even survive until at some point Rhonin could then have that reconstructive surgery we had talked about.

20140325_164836

(Tracheotomy  is a surgical  procedure which consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision in the trachea (windpipe). The resulting stoma (hole), or tracheostomy, can serve independently as an airway or as a site for a tracheostomy tube to be inserted; this tube allows a person to breathe without the use of his or her nose or mouth. Both surgical and percutaneous techniques are widely used in current surgical practice. It is among the oldest described procedures.) —- direct Quote from Wikipedia

Traqueostomia220px-Tracheostomy_tube The one on the right is a cuffed trach tube and various equipment

We did go with a Tracheostomy after they had tried absolutely everything else. We could tell right away that it was the right decision for our Rhonin. After the Tracheostomy, we had a trach care class to attend adding 5 more days to our stay.

During his stay at Primary Children’s Hospital Rhonin thought about ending his pain by not breathing…4 times! I have never cried and prayed so hard in my life. I have nothing but gratitude in my heart for all the wonderful people and family that supported us while we were down in Salt lake for 2 weeks, 13 days more than planned on.

sad  trach1

Just a day or so after getting his Trach, still sedated.

 

20140327_124639-MIXThe day they let the sedation wear off. 🙂

20140328_15395220140328_15393620140328_153932 The day they let me hold him again. One week was way too long to not hold your baby!

 

smile trach The day they let us out of the critical care floor and on to the normal recovery floor. Someone was very happy!

rhonin A few days after getting home.

rhonin and Liam   2 weeks after coming home. He was all smiles again. And hugging on his brother.

outside Now-a-days he is like any other little boy, he loves to play outside. That is what he is doing here. He was about to go down a slide.

rhonin1 This is now 6/16/14. And of course walking around getting in to all sorts of stuff he isn’t suppose too all over again.

On a side note after we got out of the Hospital he had lost 5 pounds and couldn’t walk. His muscles were to weak and trying to get his appetite back is still a struggle. I won’t say that living with a little kid with a trach is easy. It’s not. I can’t go on a date with my husband unless I have a trained person to take care of Rhonin in case of an emergence. I don’t get a full nights rest…like ever, not kidding, I just had my own tonsils yanked out and even on drugs I was able to wake up and still take care Rhonin’s needs. Rhonin likes to get all tangled up in his humidity cord and it pulls the sleep mask off his Trach and I have to constantly get up and reposition him and the hose. He needs the humidity so that his lungs don’t get all dried out and get cracked and start bleeding.

We now have a date for his reconstructive surgery. July 14th, again, sedated for a week then a few days of awake recovery and then we can come home. Trach free. I will fully admit to being more than a little freaked out about him going back to the hospital for this surgery. I keep telling myself that this time it’ll be less scary because it’ll be planned. So different. This time Rhonin won’t have a cold that will complicate matters. If you pray, please send a plead on Rhonin’s behalf.

So that is a little more of some of the craziness that I have dealt with recently.

 

 

 

 

About amber

Mother of 2, wife to one that somehow puts up with me. Cook, writer, passionate about my family and future. Excited about all the many possibilities and opportunities that may come our way.
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